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["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details) Many researchers, especially in the West, accept that there is a differentiation to be made between religion and spirituality but\nthe two aspects are linked in that, for some,\nreligion becomes the outward expression of\nan inner spirituality. In this context, the concept of spirituality has a broader meaning\nthan religion and encompasses philosophical\nideas about life, its meaning and purpose\n{Harrison, 1993; Dyson etal, 1997). According to Wright (1999) spirituality can be seen as the summation of our values which determines the process of how we interact with the world; whereas religion is seen as a pathway to follow the practices and thoughts that are appropriate to a particular faith.","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Artsanthia et al.",2011,"Exploring the Palliative Care Needs\nof People Living in Thailand With\nEnd-Stage Renal Disease A Pilot Study","Journal of Hospice & Palliative Nursing","Aims to explore the palliative care needs for Thai people living with end-stage renal disease (ESRD)","Thailand","Thai People","(i) 30 participants with ESRD, (ii) 39 family members, \n(iii) 4 community leaders\n(iv) 4 healthcare providers","Pilot study that was undertaken as a needs assessment","uncertainty in illness constructs whicn include: \n(i) tremendous suffering: This theme reflected suffering at physical, emotional, and spiritual levels\n(ii) economic consequences: Many were forced to retire early. The economic consequences also affected their selfimage as a provider of the family in many cases, as well as their ability to secure economic necessities they have previously been accustomed to. \n(iii) inadequate community support: teamwork among clinic staff and homebased care services in the community was not effective, which also resulted in a diminished capacity to care for their loved ones\n(iv) concern for the future: lack of knowledge related to how to care\nfor their loved one at home as he/she became increasingly ill. Another issue that arose was who would be the decision maker for the person with ESRD and when must that be determined.","(i) The study participants recognized the need for professional caregivers and family members to work together\nso that families and those living with ESRD can learn about the process of dying and how to best provide EOL care.\n(ii) Need for community support for renal patients including coordination of existing resources and additional resources from both governmental\nand nongovernmental sources. They identified the need for community teams who can provide support to persons with ESRD and their families in the own home and community setting throughout the stages of the disease including death.","(i) Health care providers in hospice and palliative care (includes nurses)","N/A ","N/A","Mixed-Methods: interviews; focus groups; survey including (Edmonton Symptom Assessment Scale, Revised\nVersion (ESAS-r))","Considered the following religions: Buddhist (96%), Islam (3%), Christianity (1%); study mentioned spirituality but has not explored it specifically","(i) Focused on end-of-life care needs for Thai people with ESRD\n(ii) Considered diverse religious beliefs and practices mainly from beliefs of Buddhism, the important\nthings that help people accept reality are the Four Noble Truths from Buddha:\n(i) The first truth is that suffering is common to all. It asserts that the nature of life is always transitory\n(iii) The second noble truth relates to the cause of suffering. According to Buddha, the main causes of suffering are cravings based on sensual pleasure, money, or power\n(iii) The third noble truth relates to the end of suffering\n(iv) The final and fourth noble truth is the path to end\nsuffering","Preliminary data from this pilot study suggest that persons with ESRD and their families experience great suffering from physical symptoms as well as emotional, spiritual, and economic stress. In addition, their concerns include a current lack of community services and uncertainty of the future. To achieve high-quality palliative care, state-ofthe-art symptom management and family and community support are necessary along with a strong health provider structure."]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)\nMany researchers, especially in the West,\naccept that there is a differentiation to be\nmade between religion and spirituality but\nthe two aspects are linked in that, for some,\nreligion becomes the outward expression of\nan inner spirituality. In this context, the concept\nof spirituality has a broader meaning\nthan religion and encompasses philosophical\nideas about life, its meaning and purpose\n{Harrison, 1993; Dyson etal, 1997).\nAccording to Wright (1999)\nspirituality can be seen as the summation of\nour values which determines the process of\nhow we interact with the world; whereas\nreligion is seen as a pathway to follow the\npractices and thoughts that are appropriate\nto a particular faith.","Cultural-sensitivity to Non-dominant Canadiay Groups ","Main Findings","Additional information related to the overall scoping question"]
["Balboni et al",2013,"Provision of Spiritual Support to Patients With Advanced Cancer\nby Religious Communities and Associations With Medical Care\nat the End of Life","JAMA Intern Med","To determine whether spiritual support from religious communities influences\nterminally ill patients’ medical care and quality of life (QoL) near death.","USA mutli-site","American people","343 Advanced Cancer patients","Primary research","High level of spiritual support from religious groups\nHigh reliance on religious coping","Higher religious support from medical staff","Medical staff in palliative care","NA","NA","Multisite cohort study of 343 patients with advanced cancer enrolled from September 2002 through August 2008 and followed up (median duration, 116 days) until death. Base-line interviews assessed support of patients’ spiritual needs\nby religious communities. End-of-life medical care in the final week included the following:hospice, aggressive EoL measures (care in an intensive care unit [ICU], resuscitation, or\nventilation), and ICU death.End-of-life QoL was assessed by caregiver ratings of patient QoL in the last week of life. \nA clinician-based, 38-question international survey was used to characterize the impacts of medical, religious, social, and system factors on end-of-life care after trauma.","Multivariable regression analyses were performed on EoL care outcomes in relation to religious community spiritual support, controlling for confounding\nvariables, and were repeated among high religious coping and racial/ethnic minority patients.\nSpecific spiritual and religious issues are not discussed.","Not considered","Patients reporting high spiritual support from religious communities (43%) were less likely to receive hospice, more\nlikely to receive aggressive EoL measures, and more\nlikely to die in an ICU. Risks of receiving aggressive EoL interventions and ICU deaths were greater among high religious coping and racial/\nethnic minority patients). Among patients well-supported by religious communities, receiving spiritual support from the medical team was associated with higher rates of hospice use, fewer aggressive interventions and fewer ICU deaths ); and EoL\ndiscussions were associated with fewer aggressive interventions ","Terminally ill patients who are well supported by religious communities access hospice care less and aggressive medical interventions more near death.\nSpiritual care and EoL discussions by the medical team may reduce aggressive treatment,\nhighlighting spiritual care as a key component of EoL medical care guidelines."]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadiay Groups ","Main Findings","Additional information related to the overall scoping question"]
["Ball et al",2010,"The Impact of Country and Culture on End-of-Life Care for\nInjured Patients: Results From an International Survey","The Journal of TRAUMA® Injury, Infection, and Critical Care","To better understand end-of-life processes after major injury by comparing clinician viewpoints from various countries and cultures.","United States (49%), Canada\n(19%), South Africa (11%), Europe (England, Sweden,\nGermany, Holland, Czech Republic, Greece - 9%), Asia (Japan, China,\nIndia, and Thailand - 8%), and Australasia","American, Canadian, South African, European, Asian, Australian/New Zealanders","413 clinicians","Primary research","Resource limitations in South Africa and Asia","Ethical consultation service available and used","Clinicians and 'intensivists' dealing with trauma patients","NA","NA","A clinician-based, 38-question international survey was used to characterize the impacts of medical, religious, social, and system factors on end-of-life care after trauma.","Not specifically considered\n\nPhysician’s beliefs regarding endof-life care vary across country and geographic region as the result of a complex interaction between societal norms, religion, and technology","Not specifically considered","In America, the admitting surgeon guided most end-of-life decisions (51%), when compared with all other countries (0 –27%). The practice structure of American respondents also varied from other regions. Formal medical futility laws are rarely available\n(14 –38%). Ethical consultation services are often accessible (29 –98%), but rarely used (0 –29%), and typically unhelpful ( 30%). End-of-life\ndecision making for patients with traumatic brain injuries varied extensively across regions with regard to the impact of patient age, Glasgow\nComa Scale score, and clinician philosophy. Similar differences were\nobserved for spinal cord injuries (age and functional level). The availability\nand use of “donation after cardiac death” also varied substantially\nbetween countries.","Geographic differences in religion, practice\ncomposition, decision-maker viewpoint, and institutional resources resulted in significant variation in end-of-life care after injury. These disparities\nreflect competing concepts (patient autonomy, distributive justice, and religion).\n"]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadiay Groups ","Main Findings","Additional information related to the overall scoping question"]
["Blank",2011,"End-of-Life Decision Making across Cultures","Cost and end-of-life care","Elusidate what works and fails to work in comparative studies within a wide variety of institutional and value contexts and illuminate the commonalities of problems and variables across countries. Given the complexity of end-of-life issues, only with a thorough knowledge of what occurs across many countries can we generate the evidence necessary to consider the full array of available options.","12 countries - USA, the UK, Netherlands, Brazil, China, Turkey, India,  Kenya  Germany, Thailand, Taiwan and Japan",null,null,"Comparative analysis of existing book",{"$nulls":3},"NA","NA","Case Studies: To facilitate comparative data, contributors were asked where possible to address these questions and issues:\n1. What are the estimated costs of dying, per person and aggregate?\n2. What proportion of health care costs are expended in last three months of life? The last six months of life?\n3. What proportion of population dies in intensive care units, hospital, hospice, home?\n4. What proportion dies with some form of advance directive? What forms of advance directives are available? Are they binding?\n5. What is the level of availability to pain management?\n6. What is the mix of high technology and palliative care?\n7. What are cut off points for aggressive care? Who decides? What is legal definition of death?\n8. What government policies, if any, are operative in end-of-life decisions?\n9. What policies, if any, are there for assisted suicide/euthanasia?\n10. What agents are most responsible for making these decisions (a government agency, the medical community, ethics committees, the family)?\n11. What role does age play, if any, in decision making at end of life?\n12. What factors unique to the country (cultural, social, religious, economic, etc.) are critical for understanding end of life decision making in that country?","Religious factors are particularly critical dimensions for death-related policies, and the single most important influence in some countries","Cultural factors and social values vary across countries and in some cases were found to be most crucial for end-of-life decision making. This study reiterated that, despite what much of the bioethics literature assumes, values dominant in the West such as individual rights, lifestyle choice, and the heavy dependence on medical fixes, are not universals but rather exceptions.Moreover,, given increased cultural diversity within western nations, there can be strong cultural and value divisions within a country that are important in defining end-of-life policies.\nSocial structures, particularly the importance of the family and the role of women, can be central to care of the terminally ill and in setting the boundaries of such care. In many countries extended families and communities still have a vital role to play, while in other countries even the nuclear family seems to play a limited role in care giving.\nBRAZIL, cultural silence around death","Systematic, accurate data on dying in their countries was not available. Only Japan, Taiwan, the U.K., and the U.S. systematically collect data on the causes, costs, and numbers of deaths nationally.\nThe economic wealth and cultural heritage of the country are important determinants of where people die. A key social factor is the strength of the extended family structure and the duty of family members to care for the dying person. In most of the world and in a majority of our countries, most people die at home. In Turkey, for instance, a resolute duty of children to look after their parents, combined with limited access to life-support technologies, means that the vast majority of terminal patients die at home.Kenya, too, has a strong extended family support system, a severely under funded and stressed health care system and very few available life support systems. Therefore, like Turkey, most deaths occur at home.\nIn India, another country with a poor medical infrastructure and a strong notion of family responsibility, outside of urban areas, most people die at home\n In urban areas, the middle and upper classes might go to hospitals or nursing homes, but since there are few intensive care units, the proportion that die there is insignificant. China, likewise, demonstrates a clear distinction between urban and rural areas. Although reliable estimates again were not available, the norm is for rural residents to die at home and urban residents in hospital.44 Even though dying at home has a special cultural meaning both for Chinese patients and their families and even though most cancer patients prefer to receive terminal care and die at home, in Taiwan, an increasing number of terminal patients are dying in hospitals, especially in the urban areas where traditional culture has been diluted by western values.45 However, even there, 2000 data still show that 58 percent die at home (80 percent in rural areas, 20 percent in urban) and only 35 percent in hospital.\nOnly when we move to western countries","In light of demographic patterns, progressively scarce health care resources, and an expanding array of life-saving technologies, decisions at the end of\nlife are becoming problematic matters of public and, thus, scholarly concern in most countries. Issues at the end of life are central not only to bioethics\nbut also raise important ancillary policy dimensions\n\nThe analysis here demonstrates that end-of-life policies across nations vary both in terms of substance and refinement. Although all countries were found to be addressing some of the issues surrounding end-of-life decisions, the importance of culture and economics cannot be overestimated when dealing with the profoundly emotional subject of death."]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadiay Groups ","Main Findings","Additional information related to the overall scoping question"]
["Bloomer et al",2013,"Ensuring cultural sensitivity for Muslim patients In the Australian\nICU: Considerations for care","Australian Critical Care","Aims to describe the Islamic faith in terms of Islamic teachings, beliefs and com-\nmon practices, considering how this impacts upon the perception of illness, the family unit and how it functions, decision-making and care preferences, particularly at the end of life in the intensive care unit","Australia","Muslim","Healthcare","discussion paper","It  Is neithe rpossible nor practical for  every intensive care clinician  to hve an intimate understanding of Islam and Muslim practices, and cultural variations amongst Muslims will mean that not all beliefs or practices will be applicable to all Muslims. .","Being open and flexible in the way that care is provided and respectiful of the needs of Muslim patients andtheir families is essential to providing culturally sensitive care","Healthcare","NA","NA","NA","Islamis religious practices. For Muslims, religious faith is core to coping with death. Death is a bridge to an eternal afterlife and a journey towards resurrection and meeting god.Provision of an appropriate religious or spiritual leader is necessary. This leader should be included in end-of-life discussions at the family's discretion, even if this means delaying some care tasks. Some prefer to be with the person in the last moments to ensure religious rituals are observed.  Muslims believe in Shahadtain, signifying the person entering Paradise. This might include facing the person towards Mecca even if this means moving equipment. The body should be treated with respect and gentleness as Muslims believe the person's soul can feel pain until burial. Some families may perform a washing ritual or that the person is touched only by Muslims or those of the same-sex. Remove tubing, Equipment, false teeth, contact lenses, artificial limbs and jewelry. When in doubt ask the family or explain why preferences cannot be accommodated.","With increasing cultural diversity there is a growing need for clinicians to ensure that holistic care is provided that is also culturally congruent, particularly for those from minority or marginalized ethnic backgrounds. They should promote care that's respectful of the values and beliefs of various culturess, be culturally inclusive, empowering and meaningful to various cultures; and should meet the diverse needs of the Australian community.  ","In intensive care the patient is dependent onnurses attitudes, values and belief systems, particularly in relation to holistic care for diversel minority ethnic or cultural groups. This is influenced by the model of care and the curses personal philosophy of caring. Family centered care is based on respect and partnership amongst patients, families and clinicians. This is importantfor the Islamic patient. Family inclusion in care planning is of high importance. Effective Family centered care is also reliant on establishing rapport and open effective communications. Muslims are expected to receive death with self-control, patience and prayer. This helps the family overcome depression, anxiety, helplessness and disappointment","ISLAM. All from new members have duties towards each other. Parents care forl and educate children and children are expected to look after that parents as they age. Mothers should be honoured. Life is sacred and an opportunity for spirituall refinement. Illness is a test of faithand a form of atonement the sins of the past. Bonus is seen as an opportunity doing hundreds of person spiritual connection. Muslims respond to illness with stoicism. God is the ultimate healer. Illness and cure are God's will. Death is by gold's permission. Saving a life and caring for someone is one of the highest imperatives in Islam."]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadiay Groups ","Main Findings","Additional information related to the overall scoping question"]
["Braun et al",2010,"The physician’s professional role in end-of-life decision-making: Voices of racially\nand ethnically diverse physicians","patient Education and Counseling","To describe values and beliefs guiding physicians end-of-life decision-making and explore the relationship between physicians race ethnicity and their decision-making.","USA","11Caucasion ,8 african-American, 7 Hispanic"," Physicians, internists and sub specialists","Primary research","Unrealistic requests, time constraints in private settings, lack of support in country hospitals\nGetting patients to state preferences. This places a burden on families.\nAfrican American physicians felt it was their duty to relieve burdon by making decisions. Physicians should support family decisions\nBeing asked to 'do everything' possible for the patient when the definition of 'everything' is unclear. Hispanic physicians stated that they often\nstarted discussions with the family that ‘‘doing everything’’ might inflict additional pain and suffering on a patient who would die regardless of the requested ‘‘heroic’’ treatment","Physicians should use professional virtues to tailor the EOL decision-making\nprocess in response to patients’ race/ethnicity, based on patients’ preferences.\nA protocol in place\nGetting patients to state preferences. This places a burden on families.\nAfrican American physicians felt it was their duty to relieve burdon by making decisions. Physicians should support family decisions\nAfrican-American physicians emphasize Establishing trusting relationships with family","Healthcare","Not applicable","NA","Focus groups","Some physicians in both Caucasian and Hispanic groups did not\nthink their own faith or religious beliefs had any influence on their decision-making process. Caucasian doctors expressed concern\nabout projecting their own values and, therefore, emphasized the need to stay ‘‘indifferent;’’ they thought their own religious beliefs\nwere only of help in discussing EOL care if they were similar to the patient’s because it might be comforting to patients to know their physician shared their faith. This would not help them make better\ndecisions but might strengthen the connection with the doctor and thus improve communication.\nAll African American physicians agreed on the importance of spirituality, especially for their African American patients: they\nalways talked about God and spirituality to race-concordant patients and families. They remarked on the difficulty African Americans might have with withdrawing life support or limiting treatments based on faith: ‘‘Black people, with them being religious people, the withdrawing of everything seems like suicide, and, it seems like you’re actively killing someone, and then if you\nactively kill somebody you can’t go to heaven and things like this, you know. This might damn me to hell. . . and they don’t want that\nresponsibility – so I need to better explain difference to them, need to explain that the patient’s disease process is what’s killing them, you are not doing it, okay. So they don’t tackle all that extra guilt,\nthat’s a big obstacle to getting a lot of these things done.’’",null,"Four themes appeared to transcend physicians’ race/ethnicity: (1) strong support for the physician’s role; (2) responding to ‘‘unreasonable’’ requests; (3) organizational factors; and (4) physician training and comfort with discussing EOL care. Five themes physicians seemed to manage differently based on race/ethnicity: (1) preventing and reducing the burden of surrogate decision-making; (2)\nresponding to requests for ‘‘doing everything;’’ (3) influence of physician–patient racial/ethnic\nconcordance/discordance; (4) cultural differences concerning truth-telling; and (5) spirituality and religious beliefs.","Physicians in our multi-racial/ethnic sample emphasized their commitment to their\nprofessional role in EOL decision-making. Implicitly invoking the professional virtue of self-effacement,\nthey were able to identify racially/ethnically common and diverse ethical challenges of EOL decisionmakin.g"]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadiay Groups ","Main Findings","Additional information related to the overall scoping question"]
["Brown et al",2013,"THE INTERFACE BETWEEN SOUTH ASIAN CULTURE\nAND PALLIATIVE CARE FOR CHILDREN, YOUNG PEOPLE, AND FAMILIES—A DISCUSSION PAPER","Issues in Comprehensive Pediatric Nursing","To explore the interface between South Asian cultures and the experience of palliative care services of children, young peoples, and families","UK","South Asian","Children, young people and families","Discussion paper","Uptake of pediatric and\nyoung peoples’ palliative care by members of BME communities is often\nlow in comparison to White British communities (House of Commons,\n2004.\nAsian children were less likely than the general UK population to receive continuity of palliative care and also less likely to use a children’s hospice.\nMany parents with a child with\ncomplex needs live in fear of marginalization or rejection from within\ntheir community because of the stigma of disability (Katbamna et al.,\n2000).\nFamilies described situations where there was a lack of\ninformation pre and post diagnosis concerning the child’s health needs,\ntypes of support available, and how services might be accessed. Where\nparents had entered into a consanguineous marriage, GPs were also criticized for negative attitudes (Bhakta et al., 2000, Sathyanarayana\net al., 2009). GPs who were of South Asian heritage themselves were\ndescribed as being least empathetic towards BME groups (Katbamna\net al., 2002).\nEnsuring all members of the\nfamily are included and heard, irrespective of age or abilities, can be\nchallenging for health workers.\nBrown’s (2008) study of South Asian mothers revealed that they had\noften experienced barriers to effective communication between themselves\nand health professionals and this resulted in a lack of trust and\nconfidence, sometimes with serious consequences in respect of accessing\nservices and information","Quality healthcare services is that provision is accessible to all users. In addition, care should be relevant to the health needs of the local population and provided in a manner that is socially\nand culturally acceptable\nHome based care\nContinuity of care delivered by expert and knowledgeable practitioners\nhas been recognized as a hallmark of what families perceive as ‘‘good care’’ (Carter et al., 2012; McIntosh & Runciman, 2008; Pontin & Lewis, 2008; Whiting, 2004.\nEmploying community workers, a sibling worker, care staff, and volunteers from different ethnic communities.\nRecruitment of volunteers through placing advertisements in appropriate\ncommunity languages; and the formation of an Asian Mothers’ Support\nGroup (Brown, 2007).\nWell coordinated service provision that is easily accessible (Coad et al.,\n2013; Department of Health, 2004).\nGood communication between health care professionals and patients.\nChamba & Jones (2000) describe communication as ‘‘more than\nthe sum of matched languages or the provision of interpreters’’ (p. 85) but requires insight into cultural context.\nProvide written information.\nConvey empathy, sympathy and availability.\nFamilies may welcome professionals who are willing to discuss family preferences and needs (ElGindy, 2004; Stjernsward & Clark, 2005).\n","Palliative healthcare professionals","NA","NA","NA","Families may look to\nelders within their religious and social communities for guidance.\nPalliative care may be perceived by some BME families as ‘‘giving up hope’’ (Baggerly & Abugideiri, 2010).\nA child is a gift from God (Muslims). If a child or young person has a life-limiting or life-threatening illness, parents and the extended family may believe that they have failed in their duty to protect the child (Baggerly & Abugideiri, 2010).\nIslam teaches that life is to be cherished and protected at all times and that the moment of death is fixed by Allah.\nThe complexities of Hindu and Sikh faith and practice make it particularly important that service providers do not rely on generalizations (Webb & Sergeson, 2003). Karma, reward, or punishment for present and past deeds is a fundamental belief","scant attention has been\npaid to the importance of cultural care in recent Government Reforms\nsuch as Every Child Matters (Department of Education and Science, 2003).\nPaucity of published research in the United Kingdom regarding palliative care for minority ethnic families with a life-threatened or life-limited child/young person.\nPeople represent multiple ethnic and cultural identities, possessing\nmixed heritage, with parents, grandparents, and great grandparents from different groups and communities.\nEthnicity and culture profoundly\naffect the way families experience illness, suffering, and bereavement.\nHow people understand concepts such as ‘‘health’’ and ‘‘disease’’\narises from a complex interaction between personal experiences and\ncultural lifestyles which may include factors such as language, family\nvalues, and faith (Gatrad & Sheikh, 2002; Kofman & Lukes, 2009).\nFaith and cultural perspectives of care should be included in competencies which enable them to work effectively in contemporary practice. All staff should be culturally sensitive and understand that practices and attitudes\nare constantly changing as individuals absorb the cultural traditions of the communities in which they are living, while retaining some of their inherited values, attitudes, and practices, a process known as ‘‘acculturation’’ (Brown et al., 2008).","How families understand concepts such as health and disease arise from the complex interaction between personal experience and cultural lifestyle including language, family values, and faith. There isan urgent need to involve South Asian families in research in order to provide a robust evidence-base on which to develop service provision so that care is matched to the unique needs of individuals concerned","‘‘cultural safety.’’ and competence is an evolving process that depends on selfreflection,\nself-awareness and acceptance of differences (Brown, 2007).\nMany of the resources used for professional training aim to giv eparticipants a rudiment of knowledge about  religious beliefs and practices and inevitably this is open to relying on stereotypes. There is\na tendency for training to focus on specific ethnic groups which fails to take into account variations in practice (Kamyar, 2006)."]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Bullock",2006,"Promoting Advance Directives among\nAfrican Americans: A Faith-Based Model","JOURNAL OF PALLIATIVE MEDICINE","To determine what influences African Americans’ decisions to complete or not complete advance directives is unclear","USA","African Americans","102 Africa Americans 55y+ recruited from local churches and community-based agencies","Primary research",null,"African Americans believed that\na person could experience a good death when life-sustaining measures were used.","Palliative health care professionals","NA","NA","Focus groups were used to collect data on participants’\npreferences for care, desire to make personal choices, values and attitudes, beliefs\nabout death and dying, and advance directives. A standardized interview was used in the focus groups,\n12 groups of 8 to 10 people\neach were convened over a 2-year period.","You can't plan for death because God is theonly one who can do that.\nI don’t know any black people who sit down and write out what they want to happen tothem if they are about to die. The Bible says,\n“If you speak it, as it is so, then it will be.” I don’t want to talk about death and dying.",null,"Three fourths of the participants refused to complete advance directives. The following\nfactors influenced the participants’ decisions about end-of-life care and completion of an advance directive: spirituality; view of suffering, death, and dying; social support networks;\nbarriers to utilization; and mistrust of the health care system.\nThere was a consensus that there was value in continuing on life supports because of fear of premature death.\nEighty-six percent of the study participants agreed that dying in the hospital was preferable\nto dying at home or in a hospice setting.\nStrong desire to make own choices or family to decide for them if they can't.Doctors make mistakes and can mistreat people.\n"]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Bushnaq",2008,"Palliative Care in Jordan: Culturally Sensitive Practice","JOURNAL OF PALLIATIVE MEDICINE","How do we apply what we learned in palliative care in harmony with our culture?","Jordan","Jordanian",null,"Letter to the editor",{"$nulls":3},"NA","NA",null,"Dying is God's wish and your destiny so easy for the family to accept a do-not-resuscitate concept.","Islamic. Family hope for miracle treatment elsewhere\nDon't tell patient they are dying to keep up morale \nWorking in Arab\nand Muslim culture:\n• The family system is strong. Parents, spouses, and elder\nchildren are involved in making decisions. They need to\nbe assured that we respect their opinion and input.\n• Traditional Muslims believe the patient must attend to some moral and religious obligations before death.\n• When facing suffering and illness, a traditional Muslim accepts suffering as a way of atonement of one’s sins. This doesn’t conflict with giving all efforts to relieve suffering.\nThis way of handling suffering helps the Muslim cope with the illness and to die in peace with self, God, and\nothers.\n• When we ask patients if they want to hear the truth when we are “breaking bad news,” most of the people say yes. But, we subsequently discover that they wish they did not ask. We discovered most are seeking reassurance and empathy rather than information, even though they answer\n“yes.” Our approach now is to respond to the patient’s question with a more oblique answer. We try to switch their focus toward quality of life and comfort, without offering\nfalse hope. In rare occasions, when the patient insists to know, we give the answer following the six steps\nof breaking bad news advocated by Robert Buckman.\n• When asked about prognosis, in our experience, traditional Muslims respond well to euphemisms. Instead of giving answers in terms of time, we say that he/she is really\nin a critical condition, and it is the right time for him to meet his family and to prepare for the hereafter in casehe/she deteriorates. This prompts the family to move into\ntheir traditional role, sometimes with our help, to stay at the bedside, reading a chapter from Noble Qur’an and to prompt gently that the patient speak the shahadah; (bearing\nwitness that there is no true God but Allah and Mohammad is verily his servant and his messenger).\nTell patient they are dying to allow thm to do unfinished business to meet God free of sins","This case illustrates that approaches developed in Europe and the United States can be integrated into traditional Arab culture. We think its clear that values and principles of palliative\ncare are the same everywhere, but the way we apply it needs to be tailored to local culture and norms."]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Chan et al",2005,"The Experience of Dying for Chinese Nursing Home Residents: Cultural Considerations","JOURNAL OF GERONTOLOGICAL NURSING","To understand cultural considerations needed to provide better end of life care for chinese residents in nursing care","United States","Chinese","34 Chinese residents in 3 nursing homes","Primary research","Communication problems: \nInability to Express Needs\nand Socialize. Unable to speak English to chat and explain condition, pain etc leading to frustration, agitation and upset\nIsolation. Chinese residents\nfelt lonely and isolated\nbecause of their inability to\ncommunicate with others\nRelatives’ Concerns About Care.\nBecause of the communication barriers,\nthe Chinese families were often\nconcerned about their relatives’ care.\nThey felt obligated to visit frequently\nso they could translate for them and\nensure that care was being provided","improved communication is essential in providing high-quality care. The use of on-site professional interpreters \nNgo-Metzger et al. (2003) suggested\nseveral facilities could combine\nresources to support community-sponsored interpreter banks. When possible, facilities should hire bilingual staff. The use of translation sheets or devices could also be helpful.\nSimple strategies like substituting rice for potatoes. For nursing homes\nwith a large Chinese population, serving\nsome Chinese dishes wouldincrease the amount eaten and decrease food waste.\nprefer home care.\nConcomitant use of Western medicine\nand TCM was common. Both\nhave strengths and weaknesses. TCM\nworks slowly, but is considered better\nat “clearing the root” of the problem,\nwhile Western medicine takes effect\nfaster, but sometimes is considered too\npowerful and has significant side effects\n(Lam, 2001, p. 763)",null,"NA","NA","Participant observation, event analysis, and in-depth interviews with residents and their families, nursing staff, and physicians\nThe process of providing care was observed from the\ntime residents were identified as terminally ill until their death\nEvent analysis (here the process of dying), the detailed\ndescription and analysis of anevent, was the strategy used to obtain data on the care of terminally ill residents. An event\nis defined as an occurrence\nthat is important to the investigation","The Chinese way of always maintaining hope\nmay be explained in part by their strong belief in external forces such as luck, fate, and chance, and valuing the Confucianist, Buddhist, and Taoist traditions (Leung, 1996). Belief in the importance of doing everything possible and the\nhope for recovery, even for those who are dying, strongly influences decisionmaking","Chinese people have been\ncharacterized as having family values that foster intense interdependent family ties, high filial expectations, and strong intergenerational cohesiveness\n(Bond, 1996; Chow, 1996).\nIn Chinese culture, death is a taboo\ntopic. It is expected that the family\nwill make decisions on behalf of the\npatient, including disclosure of the\ndiagnosis (Chan, Lam, Chun, Dai, &\nLeung, 1998).\nDislike of Western Food\nDislike of Facility Food.\nBeverage Preferences. Nursing\nhomes routinely distribute ice water\nto residents throughout the day.\nTypically, Chinese residents prefer to\ndrink hot water or tea.\nThe Chinese residents shared similarcultural beliefs and customs. These views influenced how they defined health and how they envisioned health\ncare would be provided. The most predominantmincluded family involvement in care, traditional Chinese medicine\n(TCM), Buddhist spiritual beliefs, and end-of-life care beliefs.\nFamily Involvement in Care. Many\nfamilies were involved in their relatives’ care. They visited once or several times a day.\nTraditional Chinese Medicine.\nMany Chinese residents chose to supplement Western medicine with the practices of TCM.. eg white flower oil and acupuncture.","The most significant factors influencing the care Chinese residents received were communication barriers,\ndislike of Western food, and differing cultural beliefs and customs. These findings offer valuable information\nin helping to develop and implement interventions to improve the terminal care of Chinese elderly individuals in\nnursing homes"]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Cheng et al",2014,"BRINGING PALLIATIVE CARE INTO GERIATRICS IN\nA CHINESE CULTURE SOCIETY—RESULTS OF A COLLABORATIVE MODEL BETWEEN PALLIATIVE MEDICINE AND GERIATRICS UNIT IN HONG KONG",{"$nulls":3},"Chinese","One hundred twenty-three elderly adults were recruited.\nThe most frequent diagnoses were cancer (33.3%), heart failure (17.1%), and renal failure (16.3%).","Letter to the editor","There are various potential barriers to individuals dying at home in Hong\nKong, including the crowded living environment, perceived threat to real estate value if death occurs at home, and social and cultural taboos","Follow-up with bereaved\nfamily caregivers is now viewed as an essential component of good palliative care","Hospice , hospital geratricians","NA","NA","Not detailed",null,"In traditional Chinese culture, death was sensitive, and mentioning it\nwas sacrilegious and to be avoided.1 It was believed to be\ndisrespectful and ominous to tell someone that he or she was dying.2 The reply by Confucius to a question on the meaning of death “While you do not know life, how can\nyou know about death,”","In the Hong Kong Chinese population, nearly all elderly persons who have terminal disease receive end-of-life\ncare and die in a hospital setting ,In the current study, only 2.7% of participants\ndied at home, confirming previous local findings that home death is difficult to achieve. Chinese individuals specifically objected to hospice services administered in the home with support from family caregivers. They would prefer institutionbased,\nnurse-administered hospice care and death outside of the home, with the main concern being financial and\nemotional burden on families that would arise from dying at home."]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Cheraghi et al",2005,"Spiritual aspects of end-of-life care for Muslim patients: experiences from Iran","International Journal of Palliative Nursing,","to describe the spiritual aspects of\npalliative care of Muslim patients based on experiences of end-oflife care in Iran.","Iran","Muslims",null,null,"The eldest family members are regarded\nas a source of spiritual blessing, religious faith, wisdom and love. Accordingly, there IS a general feeling among most people that\nsending an elderly parent to an institution violates people's sense of sacred duty towards them.\nOlder people often prefer to die in their  home, with their family members in attendance.","Palliative care nurses need to be informed about religious aspects of people around the world as a part of palliative care. \nMcGoldrick (1999) states that being\nnon-judgmental and accepting of patients' thoughts and feelings, and giving them the opportunity to talk about their emotions openly, facilitates the process of adjustment to their changed health status and circumstances. This involves active listening, reflecting and affirming feelings (Murray and Neilson, 1994). Additionally, learning to care for people in the context of their culture and religion is an aspect of palliative and transcultural nursing care (Andrews and Hanson, 1999).\nFriends and relatives should be called to\ngather around the dying person if they\nwish to do so.\n• A few drops of a spiritually blessed water 'ab-e-torbat' are put in the mouth to bless the dying person. The water is supposed to be imported from Kerbalah from the land where Imam Hussein is buried.\n• It is Mustahab (rewardable action) to\ncarry a person experiencing a painfully\nslow death to the place where ho can\noffer prayers, provided that it does not\ncause him any discomfort.\n• If a person is very near death, certain religious texts have most significance including: Surah Yasin, Surah as-Saffat, Surah al-Ahzab, Ayat al-Kursi and the 54th verse of Surah al-A'raf and the last three verses of Surah al-Baqarah. Tlic first chapter (Surah) of the Quran, (that is called Fatehah), is traditionally read to people who arc dying and also after death.\n• Some Iranian people gain comfort from\ncertain poems.\nBefore praying Muslims need\naccess to water to wash either in a bathroom or m a bowl, if in bed.\n# it IS essential that an Iman or other faith leader is available to provide appropriate religious mmistry.\n# A Muslim patient who is dying, should be laid on his/her back, if possible, in such a manner that the soles of his/her feet would face the Qiblah (direction towards Mecca). According to Rassool (2000) if this IS not possible, then it is acceptable toallow the individual to lie on his/her back with the face and soles of the feet facing the direction of the Qiblah. This practice iS very important for dying Muslim patients and their significant others.\n# The doctrinal testimony of Islam\n(Shahadatain or Retribution) and the\nacknowledgment of the 12 Imams and\nother tenets of faith should be read to a\ndying person.\n# Verses from the Quran arc recited and the dying person is encouraged to recite if conscious and ask Allah for forgiveness\nAFTER DEATH\n• The eyes and lips of a dead person\nshould be shut, the chin be tied, the\nhands and feet straightened and a cloth\nspread over the body.\n• The body must be kept covered at all\ntimes.\n• Only health workers of the same sex\nshould touch the body if at all possible.\n9 The healthcare worker should wash\naway excess blood, fluids or excrement\nfrom the body. There is a ritual washing\nof the body performed by a same-sex\nMuslim as soon as possible.\n• Nails should be cleaned and shortened.\n• Muslims are always buried and never\ncremated because cremation is forbidden by Islamic law. Life after death will continue in a form for which the preservation of the body is absolutely essential (Parkes et al, 1997).\n• It is customary, if the dying patient is\nwealthy, that his/her relatives put a\nsemiprecious stone like agate with 14\nprayers (panj-tan) carved on it by handicrafts specialists. This is placed under the decease's tongue after completion of funeral rites and before placing the dead person in the grave.\n• It is believed that the panj-tan enables\nthe deceased to answer properly once questioned by spirits.\nFor a woman, a prayer bead from Kerbela is placed around her neck to show the spirits she has been a good Shiite and hasmourned for Imam Hussein.\nIt is believed that the evil spirits (Shayatin) will attack the dead if left in darkness\nPerforming ritual bathing (GhusI),\nshrouding the body (Kafan), rubbing\n(Hunoot) some camphor oil on the\nseven parts of the body which are placed on the ground during prostration {sajdah) when praying (Namaz), i.e. the\nforehead, palms, knees and toes, and\nhelping with the burial to every dead\nMuslim, are important acts.",null,"NA","NA","Not described","Muslims, death is\nbelieved to be not only the cessation of a complex set of biochemical processes, but also a belief that the spirit continues to live and dying is a passage from this world to the resurrection.\nThe spirit is believed to be eternal and does not perish with death.\nReading of the Quran (the main religious text) can produce peace of mind in those who are near death. The spiritual dimension of care infiltrates all aspects of nursing care. \nIslam means (in part) peace that includes: inner peace (peace with oneself); peace with the creator, as well as peace with all creation. It is through the total submission to the will of Allah that one\nreaches this form of peace (IQRAA, 1995).\nIllness can be seen as a test from Allah.\nSalvation lies in prayer.\nIn Shahadatain (the doctrinal testimony of Islam), Suni Muslim just recite a statement of faith ('There is no god but Allah, and Muhammad is His prophet'), while the Shia branch, m addition to this statement, recites 12 Imams.","Traditionally older people are respected, listened to and are treated accordingly. It\nis customary for all to stand up once they enter a room, the best seats are allocated to them and they are offered drinks and food\nbefore anyone else. Younger people are expected to be polite and restrain themselves and even avoid drinking alcohol or smoking cigarettes when older people are\npresent. Mothers particularly are respected (Culture of Iran, 2005).","The spiritual needs and preferences of\npatients may change over time and in\nresponse to their changing clinical situations.\nFor palliative care nurses irrespective\nof faith, a key requirement is to be sensitive to patients' and families' needs. Nurses shoud be willing to ask if unsure about the correct procedure. People may express their spiritual needs in various ways and it is important not to stereotype people on\nthe basis of religion or race. "]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Chettih",2012,"Turning the Lens Inward: Cultural Competence\nand Providers’ Values in Health Care Decision\nMaking","The Gerontologist","Although existing literature addresses providers ’ need to attend to patients ’ cultural values and beliefs on these issues, less attention has been paid to how the corresponding values and beliefs of providers color the care they deliver and their assessments of older adults ’ DM capacity.providers\nmay not adequately consider the subtle and often unconscious impact of their own cultural fi lters,\nand those of their organizations, on their ability to deliver competent care in working with older adults. The purpose of this paper is to bring that\nchallenge front and center.","United States","Non specified","General","Review","Health care providers understanding \nCultural counter-ftransfernce\nPatient and family: Highly charged context of decision making and non-conscious application of values and attitudes","A provider ’ s commitment\nto understanding the beliefs, values , and attitudes embedded in her own worldview — and that of her organization and her society — and to\nhonoring her patient ’ s worldview when the two diverge will promote culturally profi cient care and assessment .",null,"NA","NA","NA",null,null,"A social constructivist perspective and the clinical concept of\ncultural countertransference are proposed as aides in achieving awareness and improving care.\nThe need to look beyond the individual practitioner’ s internal processes is echoed in Shah ’ s (2007) call to move beyond cultural competence —\nwhich seeks to make patients comfortable within a Western paradigm of treatment — to what he\ncalls ethnomedical competence, which concerns the systematic use of symmetrical learning processes\nto preserve culturally embedded concepts.\nThis approach encourages the use of plural and hybrid (Western and non-Western) treatment modalities.\nOnly by doing so, Shah argues, can providers and their organizations truly arrive at best practices.\nThe imperative to transcend the level of the individual actors represents the next challenge for providers, organizations , and society in developing cultural profi ciency."]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Davidson et al",2008,"Gap Analysis of Cultural and Religious Needs of\nHospitalized Patients","CRITICAL CARE NURSING QUARTERLY","Identify patient and family needs specifically related to an in-hospital birth or death.\nThis study aimed to perform a gap analysis between identified needs and current hospital practice,\nservices, and resources",null,"Muslim, Baha’i, Catholic, Protestant, Jewish,\nBuddhist, Mormon, Jehovah’sWitness, Latino, Filipino, Chinese, African American",null,"Review","Specific items not currently found in the hospital and advised by the participants included bibles or prayer books for more than just the Christian religion, bookcases for the chapel,\ninspirational texts, texts on grief and coping, and Spanish language bibles.","Practice issues such as respecting plain-clothed clergy, the impact of “rule-orientation” on family needs, and the universal need to call clergy early were identified","Hwalthcare providers","NA","NA","Twenty-two semistructured\ninterviews were audiotaped, and 6 lectures and 2 panel discussions were videotaped. Transcriptions\nwere distributed to the research team and manually coded for gaps between current practices versus stated needs. Group process was used to form consensus regarding findings","Gaps in available resources, such as religious requirements eg bible,  prayer books, rugs, and compasses,were identified. \nJehovah’s Witnesses gave testimony to their experiences with healthcare\nworkers. They relayed how they felt badgered and accosted because of the issue of blood\ntransfusion.\nMuslim participants also disclosed a death\nritual that explains why some Muslims prefer\nto decrease sedation at the time of death. If the patient is heavily sedated, he cannot fulfill this religious obligation","Knowledge gaps included many issues such as the Muslim preference for decreasing sedatives at end of life to be able to recite the sacred prayer while dying.\navailability of Kosher and Halaal food. Latino, Muslim, and Orthodox Jewish participants raised issues concerning modesty.\nA Mexican female stated, “Latino males will not like a male doctor taking care of women, prefers a woman to see the woman’s private\nparts . . . he will get really upset . . . important that the wife not be touched and exposed—\nthis really bothers them . . . it is very important\nthat a female nurse to be present.”\nJewish rabbi offered when asked about special roles of a man versus a woman during death, that gender touching is an issue even after death (done at the mortuary),\nMuslim men need their knees covered to pray and that traditional\nhospital gowns are too short","Gaps in available resources, such as prayer books, rugs, and compasses,were identified. Knowledge gaps included many issues such as the Muslim preference for decreasing sedatives at end of life to be able to recite the sacred prayer while dying. Practice issues such as respecting plain-clothed clergy, the impact of “rule-orientation” on family needs, and the universal need to call clergy early were identified"]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["del Río",2010,"The Influence of Latino Ethnocultural Factors on Decision Making at the End of Life: Withholding and Withdrawing Artificial Nutrition and Hydration","Journal of Social Work in End-Of-Life &\nPalliative Care","To review the legal precedents that underpin the policies and practices found in most medical settings in relation to artificial nutrition and hydration (ANH) as the context for exploring the end-of-life (EOL) care decision-making process of Latinos.\nThe study examines  the ways in which the values of familismo, filial duty, respect for authority figures, and personalismo play a major role in this group’s decision-making process.\nThe perspectives of ethicists who argue that Western bioethical\napproaches fail to recognize that cultural norms and values as\nwell as religious convictions play a significant role in shaping\nmoral deliberations, including the decision to withdraw ANH from\nindividuals with a terminal illness, are explored","USA","Latinos",null,"Review",null,"Personalismo can also be achieved by reducing physical distances during\ninteractions, using appropriate physical contact, using verbal and nonverbal\nsigns of respect—such as use of the honorifics Sen˜or (Mr.) or Sen˜ora\n(Mrs.)—and conversing about the patient’s life at each visit (Flores et al.,\n2000; Paniagua, 1998). Another expression of personalismo is the offering of gifts and the invitation to family functions as ways of expressing gratitude for the services provided by the professionals (Paniagua).",null,"NA","NA","Review",null,"Familismo—the emphasis placed on family loyalty and cohesion—is\nconsidered one of the most important values of the Latino culture (Santiago-Rivera, 2003; Zebracki & Stancin, 2007). Familismo includes: (a) perceived obligation to provide material and emotional support to the members\nof the extended family; (b) reliance on relatives for help and support;\nand (c) the perception of relatives as behavioral and attitudinal referents\n(Marin & Marin, 1991, pp. 13–14).\nSocieties that have a collectivistic worldview value interdependence\nsuch that individuals are willing to sacrifice the needs of the individual over the needs of the family (Santiago-Rivera, 2003, p. 6).\nFilial piety-obligation toward the family and the community, and family collectivity and interdependence that override\nindividualism and independence.\nAnother key cultural value in the Latino community is respeto or respect. This value influences all social interactions and dictates differential behavior toward others on the basis of a person’s authority, age, gender, and socioeconomic status. Thus, health care professionals are shown respect.\nPersonalismo refers to the development of a warm,\npersonal relationship with the medical professional (Flores et al., 2000; Santiago-Rivera, 2003; Zebracki & Stancin, 2007). It means that trust is built over time, based on a display of mutual respect (Talamantes et al., 2000).","From a cross-cultural ethical perspective, it is important for health care providers to understand that in a pluralistic society, patients and\ntheir families bring multiple models of healing and decision making\nto clinical encounters based on different cultural and religious values.\nCross-cultural health care delivery presents challenges\nassociated with factors that include poverty, immigration status, inequalities\nin access to health care, language barriers, lack of health coverage, and disparities in health care. But these challenges also involve value-laden conflicts between patients with one set of cultural values and beliefs and health care providers with others. The conflicts are exacerbated when the health care provider has a conception about death and dying and decision making at the end of life grounded in a Western autonomy paradigm and the provider may think that this conception can be universally applied. A one-size-fits-all approach to medical decision making does not work in a multicultural and pluralistic society","Advance health care planning has evolved in the context of Western cultures, and is based\nupon a Western concept of autonomy. Autonomy asserts that the individual has the right to determine what will or will not happen to her=his body.\nMany differences between the EOL decision-making patterns of Latinos and European whites, including withholding and withdrawing ANH, are based on\nethnocultural factors. However, the field of bioethics has been slow in acknowledging cultural differences and has been criticized for being ethnocentric,\npsychocentric, and medicocentric, and for claiming the autonomy of the person as the paramount value along with the ideas of justice and beneficence\n(Hern, Koenig, Moore, & Marshall, 1998; Kleinman, 1995)."]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["DeSanto-Madeya et al",2009,"Associations between United States Acculturation and the End-of-Life Experience of Caregivers of Patients with Advanced Cancer","JOURNAL OF PALLIATIVE MEDICINE","To examine the extent to which EOL treatment factors (EOL treatment preferences and physician– caregiver communication) and select psychosocial factors (mental health, complementary therapies, and internal and external social support) differ based on the level of acculturation of caregivers of patients with advanced cancer.","USA","Not specified","Caregivers of patients with Advanced cancer","Primary research","NA","NA",null,"NA","NA","One hundred sixty-seven primary caregivers of patients with advanced cancer were interviewed as\npart of the multisite, prospective Coping with Cancer Study.","Caregivers’ perception of\nreligious=spiritual support from the community and medical system was assessed using two questions from the Religious\nCoping Index (RCI).22 Caregivers were asked: ‘‘To what extent are your religious=spiritual needs being supported by your religious community?’’ and ‘‘To what extent are your\nreligious=spiritual needs being supported by the medical system?’’ (1=not at all to 5=completely supported).","Used Cuellar’s Acculturation Rating\nScale (ARS) and an investigator-developed United States\nAcculturation Scale: A Measure to Assess Americanization\n(USAS), caregiverswere asked questions related to their language\npreference and cultural identit","Caregivers who were less acculturated were more positively predisposed to use of a feeding tube at EOL, were more likely to perceive that they received too much information from their doctors, were less likely to use mental health services  and desire additional services than their more acculturated counterparts. Additionally, caregivers who were less acculturated cared for patients who were less likely to report having a living will or durable power of attorney for health care than more acculturated caregivers. Caregivers who were less acculturated felt their religious and spiritual needs were supported by both the community and medical system, had higher degrees of self-efficacy, and had stronger family relationships and\nsupport.\nThe level of acculturation of caregivers of patients with advanced cancer does contribute to differences\nin EOL preferences and EOL medical decision-making."]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Deshpande",2005,"Attitudes of Asian-Indian Hindus Toward End-of-Life Care","J Am Geriatr Soc","To review basic Hindu philosophical concepts salient to\ncaring for patients at the end of life.",null,"Asian-Indian Hindus-80% of Asian Indians are Hind","NA","Case study review","NA","NA","Healthcare","NA","NA","Case studies","Hinduism is more of a philosophy than an organized religion. It does not mandate specific customs, rituals, attendance\nat temples, or practices; most of what Asian Hindus\npractice are cultural interpretations of aspects of\nHinduism.\nIssues related to end-of-life care are not specifically addressed in traditional Hindu philosophy.","NA","In light of the growing cultural diversity of our aging population, it is increasingly evident that a multitude of philosophies exist about end-of-life care. Many of these represent significant departures from the Western bioethical model, which places importance on patient autonomy.\nFurthermore, many of the issues and conflicts that have been published arise in the context of Judeo-Christian\nperspectives on life and death. An inherent but central difference between these theological perspectives and that\nof many Eastern religions is whether life is seen as finite or as part of a continuum."]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Donovan et al",2011,"The influence of culture on home-based family caregiving at end-of-life: A case study of Dutch reformed family care givers in Ontario, Canada","Social Science & Medicine","Cultural factors are known to shape the experience of caregiving; however, most research to date tends to neglect\nthe experiences of FCGs from different cultural groups. This understanding is necessary to ensure that supportive services are both meaningful and culturally-appropriate. Aim: to understand  Dutch Reformed FCGs (n = 5) experiences of caregiving and bereavement.Context: At Home.","Canada","Dutch reformed","Caregivers","Primary research",{"$nulls":3},"NA","NA","Potential participants were approached by the palliative care team over a 16 month period via regularly-scheduled home care\nvisits with patients. Even with the assistance of this specialty palliative care team, only five FCGs were recruited","Based on Calvinist doctine.  ost beliefs are common with\nother Christian-based religions. Differences lie mainly with interpretations\nof the Bible, as well as to church organisation and leadership structure.\nThey felt that being prayed for and just knowing that community support was available if needed\nwas sufficient and suggested that they would accept help if it was\nnecessary. In addition to relying on support from family members and friends, limited use also appeared to be related to issues of\nprivacy and independence and not wanting to become too dependent.\nprognoses were often framed by religious belief systems as well, sometimes creating dilemmas regarding the most appropriate\ncourse of treatment. For example, the belief in the afterlife is fundamental to the Christian and Canadian Reformed faiths. Death\nmay occur to the human body, but the spirit is understood to live\non. One caregiver explains how this affects treatment. The propensity to engage in treatments that were\nconsidered futile was reduced while those that were understood to\nimprove the quality of life were increased","Cultural identity provided a framework through which to understand and make sense of the experience, while group membership provided access to networks of informal support.\nFCGs found it difficult to distinguish caregiving from other forms of family and group responsibilities. FCGs spoke about the ways in\nwhich their culture values independence and self-reliance; as such, there was a strong desire to support their loved-ones at home\nthroughout the illness and death even","Three themes were salient to this group as a cultural entity: cultural attitudes towards care, religious beliefs and coping, and culturally-informed care-seeking behaviours. These three themes were seen to be a function of their religious and ethnic identities and were reinforced by ties to the communities in which they resided.","Importance of geographical proximity and community"]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Doorenbos and Myers Schim",2004,"Cultural competence in hospice","AM J HOSP PALLIAT CARE","Research shows that ethnic minorities access hospice care significantly less often than Caucasians. In part, this has been attributed to the lack of cultural competence among hospice staff. AIM: To assess cultural competence among hospice workers","USA Michigan","Caucasian (82 percent).\nTwelve percent were African American,one respondent was of American Indian decent, and one of Asian decent","Hospice staff and volunteers\nRespondent ages ranged from 25- 71 years, with a mean age of 45. Composed as follows: nursing (40 percent), followed by social work (14 percent), nursing assistants (11 percent), clerical (10 percent), clergy (8 percent), volunteer (5 percent), and administrative (4 percent)","Primary research",{"$nulls":3},"NA","NA","A descriptive, exploratory survey that was submitted to 125 interdisciplinary hospice employees/voluntary workers  and completed by 113 of those employees/voluntary workers.\nCultural Competence Assessment (CCA) tool\nand questions collecting demographic\nand prior experience data.",null,null,"Cultural-competence behavior\nscores varied widely based on two\nfactors: increased education and previous cultural-diversity training. The\nresults of this study provide information\nregarding cultural competence in\nhospice. In their efforts to provide culturally appropriate end-of-life care,\nhospices can use the information in\nthis study to implement intervention\nplans aimed at increasing cultural\ncompetence among hospice staff.","The Schim and Miller Cultural Competence Model (SMCCM) consists of four components: cultural diversity, awareness, sensitivity, and\ncultural competence.\nBehavior component of the Cultural Competence Assessment (CCA) tool given in the article.\nStudy limitation: single hospice was sampled"]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Doorenbos et al",2014,"Development of a Web-Based Educational Intervention to Improve\nCross-Cultural Communication Among\nHospice Providers","Journal of Social Work in End-Of-Life &\nPalliative Care","To evaluate a Web-based educational intervention\nto improve cross-cultural communication about end-of-life\nconcerns ","USA","Not specified","Hospice providers","Intervention eavluation",{"$nulls":3},"Individual hospice providers, mostly social workers","Culture & End-of-Life: Web-based educational intervention to improve cross-cultural communication about end-of-life concerns for hospice providers with a focus on social workers.Based on realistic case studiies and multi-media instruction.\nThe Web-based training intervention\nuses the LEARN model (the acronym stands for Listen, Explain, Acknowledge, Recommend, Negotiate; Berlin & Fowkes, 1983). While using LEARN, a provider is prompted to (a) Listen to the patient’s conception of the illness, (b) Explain the biomedical model of the illness, (c) Acknowledge areas of\nagreement and potential conflict, (d) Recommend a treatment plan that involves the patient and incorporates culturally relevant approaches, and (e) Negotiate a treatment plan that creates a partnership between the patient and provider. The LEARN model enables social workers to address difficult communication\nsituations by focusing on understanding and incorporating the\npatient’s cultural context into the care plan.\n3 hours to complete","Non-structured questions in a convenience sample of 21 hospice providers\n3 Focus groups, n=6 and n=7","Faith' is covered in the online training in relation to the case studies","General cultural issues…specific case studies","Participants reported that they found the training appropriate and useful. Participants also reported finding the\nonline delivery convenient and the interactive format valuable.\nImproving the quality of cross-cultural patient-provider communication\ncan contribute to reducing disparities at end-of-life.","The delivery of cross-cultural communication education via the Internet has the ability to (a) reduce costs associated with scheduled in-service education, (b) increase active learning by providing\na self-paced format, (c) increase the consistency of instruction and experiential learning within and between sites, (d) allow for rapid customization\nof content to accommodate the unique needs of providers in diverse communities, and (e) facilitate online tracking of cultural competence training\nat the organizational level and provide organizations with feedback on problem areas (Bennett & Glasgow, 2009).\nThe conceptual foundation of this educational intervention is derived from\nthe Three- Dimensional Model of Cultural Congruence, a framework that articulates the connection between provider-level, cross-cultural communication skills and patient=family-level constructs (Schim, Doorenbos, Benkert,\n& Miller, 2007). The model is based on the idea that cultural competence is always evolving, so providers must continually improve their quality of\ncommunication in order to improve quality of patient care.","Cultural diversity recognizes the fact that the population of the United States is increasingly diverse in terms of language,\nimmigration status, and cultural heritages. Cultural awareness is a cognitive\nconstruct. Knowledge and thought are necessary to appreciate the ways in\nwhich cultures vary and are similar, the ways that cultural contexts influence\npersonal meaning, and the profound effects that culture has on health care from both provider and recipient perspectives. Cultural sensitivity is an affective or attitudinal construct. Providers’ attitudes about themselves and others and their openness to learning about cultural dimensions and diversity are essential to cultural sensitivity. Cultural competence is a behavioral construct consisting of actions in response to the demands of cultural diversity,\nawareness, and sensitivity."]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Duffy et al",2006,"Racial/Ethnic Preferences, Sex Preferences, and Perceived\nDiscrimination Related to End-of-Life Care","J Am Geriatr Soc","To investigate racial/ethnic preferences, sex preferences,\nand perceived discrimination related to end-of-life\ncare","USA","Arab Muslims, Arab Christians, Hispanics, blacks, and whites","73 members of the General public. 50+ and older.","Primary Research",null,"Concepts important to all groups included being comfortable,\nphysician communication, having responsibilities taken care of, hope and optimism, and honoring spiritual\nbeliefs. Other concepts common to most groups were love and compassion, being cared for, expressing feelings, fixing relationships, saying good-bye, having choices, making plans, not being in pain, and being ready to go.","Palliative care staff","NA","NA","Ten focus groups (4-9 per group) and a follow-up survey were conducted to obtain in-depth information on end-of-life preferences across five racial/ethnic groups in Michigan stratified by sex. There were 73 focus group participants. Plus a take home questionnaire","inverse association between religiosity and euthanasia.\nno association between religiosity and preferring life-sustaining treatment was found in this study.\nIn fact, Arab Americans in this study, who were the most religious, did not believe in life-sustaining treatment","The reluctance of Arabs to tell the patient bad news has been noted in other studies10 and is in direct conflict with Western medicine, which is designed to tell the patient the facts.\nAvoiding a nursing home was crucial for Arabs and Hispanics.\nDespite their preference for life-sustaining treatment, avoiding a feeding tube was particularly important for Hispanic women because ethnic food and celebration is an integral part of their life.\nHispanic and black men did not want life-sustaining treatment and approved of assisted suicide.\nBlack men in this study\nwere the most distrustful of docto","Arab Americans were in favor of making peace on earth and were against assisted suicide, extending life artificially, nursing homes, and telling the patient ‘‘bad news.’’Hispanic and black women were against assisted suicide and in favor of extending life, whereas the men in these\ngroups felt the opposite. Hispanic women spoke of not wanting a feeding tube and would consider alternative\nmedicine. Blacks were least opposed to nursing homes. For whites, it was important to have choices. When asked about discrimination related to end-of-life care, Muslim women\nspoke of cultural barriers, blacks spoke of inequities in the past, and whites spoke of age discrimination and abandonment when dying.\nHealthcare professionals need to keep their personal values in check regarding race/ethnicity/culture, sex, age, and diagnoses. Moreover, healthcare providers should\navoid abandoning dying patients and should build trust with patients and their families","Give useful EoL care preferences table divided by gender and ethnicity"]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Edwards et al",2010,"Review: The understanding of spirituality and the potential role of spiritual care in end-of-life and palliative care: a meta-study of qualitative research","Palliative Medicine","To synthesize qualitative literature on spirituality and spiritual care at the end of life using a systematic (‘meta-study’) review.","All geographical/national/social\nsetting","NA","Hospice or palliative care settings","Review","Barriers to spiritual care include lack of time, personal, cultural or institutional factors, and professional educational needs.\nFear of death\nSome patients described feeling hopeless, helpless, empty, down, depressed and in despair\nUnmet spiritual needs could give rise to\nspiritual distress, which could worsen physical and emotional symptoms, or present as physical discomfort\nused to legitimize increased health service utilization.\nLack of time and commitments\nimpeded care","Choice and control.\nPatients wanted healthcare givers to display ‘good qualities of humankind’, being encouraged by kind, compassionate, comforting and gentle\ncare. Patients wanted to belong, be loved, valued, affirmed and nurtured as human beings, and to be\nrespected with dignity. A patient-centred\napproach, supporting patients in their worldview, allowing them to set the agenda and make choices\nwas advocated.\nGood rapport and affirmative, valuing, trusting, personal relationships\nwith healthcare givers who were able to ‘step beyond rigid professional boundaries’ facilitated patients’ spiritual\nexpression and enabled them to respond to their own spiritual needs.\nActively listen and to show empathy.\nTo have the time to listen and get to\nknow patients, to develop relationships, enabled sensitivity to individual needs and helped facilitate spiritual\ndiscussion.\nTimely care.\nA ‘friendly spiritual environment’ could\nbe created by sharing deep thoughts and feelings\nStaff to reflect on own spirituality and beliefs.\nMore training in listening skills,\nawareness of individual needs and different cultural beliefs to benefit and enhance care.\nVocation\nTeam support\nAssessment, expression and documentation of spiritual\nneeds","Healthcare, palliative care staff","NA","NA","‘Meta-synthesis’: Eleven patient articles and eight with healthcare providers were included, incorporating data from 178 patients and 116 healthcare providers, mainly from elderly White and Judaeo-Christian origin patients with cancer.\n10 electronic\ndatabases in February 2009.\nthree main search layers: ‘qualitative’, ‘spiritual’ and ‘palliative or end-of-life’.","Spirituality was related to relationship with self; the discovery and retention of one’s intrinsic identity, the ‘authentic self’.\nPatients wanted to retain a sense of self-worth, value,\nwholeness and understanding. Spirituality\nwas related to being able to reach self-acceptance,\n‘self-reconciliation’ and peace.\nIntimate, fulfilling, meaningful\nrelationships were at the heart of spirituality and\noften the most important aspect of patients’ spiritual\nexpression.46–53,55,56 Patients desired companionship\nand relied on family and friends for support, strength,\ncomfort and meaning. It was important both to receive and to give love, to help care for others and contribute.\nBeing in touch with\nthe beauty of nature could bring comfort and inspiration, reduce anxiety and lead to a sense of wonder at the greater meaning of life. Music could\nuplift and inspire creativity and inner peace.\nMaintaining a\nclose special relationship with God was important, protecting patients from the fear of death and loneliness,\nand giving strength, comfort and peace.\nPatients expressed\nhope and motivation to survive for their families and\nhope for their future generations after their death.Search for meaning and purpose.\nNeed for closure",null,"Spirituality principally focused on relationships, rather than just meaning making, and was given as a relationship. Spirituality was a\nbroader term that may or may not encompass religion. A ‘spirit to spirit’ framework for spiritual care-giving respects individual personhood. This was achieved in the way physical care was given, by focusing on presence, journeying together, listening, connecting, creating openings, and engaging in reciprocal sharing. Affirmative relationships supported\npatients, enabling them to respond to their spiritual needs. The engagement of family caregivers in spiritual care appears underutilized. Relationships formed an integral part of spirituality as they were a spiritual need, caused spiritual distress when broken and were the way spiritual care was given.\nDistinction between ‘spirituality’ and ‘religion’."]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Ellman et al",2012,"Using Online Learning and Interactive Simulation\nTo Teach Spiritual and Cultural Aspects\nof Palliative Care to Interprofessional Students","JOURNAL OF PALLIATIVE MEDICINE","An educational program was created, implemented, and evaluated with students in medicine, nursing, chaplaincy, and social work. Five learning objectives emphasized spiritual, cultural, and interprofessional\naspects of palliative care",null,null,"medicine, nursing, chaplaincy, and social work","Intervention","NA","NA","Students with prior clinical palliative experience in the four key professions of medicine, nursing, divinity, and social work","Individual and 90 minute interprofessional workshops which were small group, interactive and problem based","The program blended two sequential components: an online interactive, case-based learning module,\nand a live, dynamic simulation workshop. The five learning objectives of the program were:\n1. To understand the basic precepts and goals of palliative care.\n2. To recognize and address common misconceptions about opioids.\n3. To identify spiritual and cultural needs of patients and understand how to meet these needs.\n4. To understand the clinical features of imminent death and how to help the patient/family at that time.\n5. To recognize the contributions of all health care professionals\nand understand the importance of the interdisciplinary team.\nBlending of online learning with live interactive simulation","Content analysis was used to analyze students’ free-text responses to four reflections in the online case, as well as open-ended questions on students’ postworkshop questionnaires, which were also analyzed quantitatively.","Reflection 2A: What are the spiritual and cultural challenges that arise in this case? And 2B: From your\nprofessional perspective, how would you take these into account when caring for Mrs. Green and her family? After viewing the family meeting video, comes Reflection 3: What\nwas accomplished by having an interdisciplinary family\nmeeting that may not have been achieved otherwise? Finally, with the patient’s terminal readmission and care at the time of death, the module ends with Reflection 4: What input from each team member did you notice to be beneficial in the care of\nthis patient?","see religious column","Analysis of 217 students’ free-text responses indicated that students of all professions recognized important\nissues beyond their own discipline, the roles of other professionals, and the value of teamcollaboration. Quantitative analysis of 309 questionnaires indicatedthat students of all professionsperceived that the programmet its five learning\nobjectives (mean response values > 4 on a 5-point Likert scale), and highly rated the program and its two components for both educational quality and usefulness for future professional work "]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Evans et al",2012,"Psychosocial, cultural, and spiritual health disparities in end-of-life and palliative care: Where we are and where we need to go","Nursing Outlook","Explores the psychosocial, cultural, and spiritual health\ndisparities existing in palliative and end-of-life care with the goal of identifying future research need","USA","African American and Hispanic","Patients","Review","African American and Hispanic\npopulations are associated with disparities because of  conscious or unconscious racism based on ignorance\nof race as a social construction and the conflation of race with misunderstood concepts of culture, ethnicity, and indicators of socioeconomic status\n(Crawley, 2005).\nDistrust of healthcare","NA","Nurses, Palliative end EoL healthcare providers","NA","NA",null,null,"There has been little or no change in hospice utilization rates for African Americans or Hispanic/Latinos over\nthe last five years (Bullock, 2011). These populations are family-centered and prefer to avoid disclosure of illness to patients, keep ill loved ones at home (Mazanec, Daly & Townsend, 2010), avoid advanced directives (Carr, 2011), seek aggressive treatment\n(Mack, Paulk, Viswanath & Prigerson, 2010), and\ndistrust the healthcare system (Johnstone & Kanitsaki,\n2009).Family-centered African Americans use only 8% of palliative and hospice services. They express lower caregiving stress and higher benefits than Whites\n(Haley et al., 2004), emphasize faith and spirituality more than Hispanic/Latinos or Whites do, and, because they view suffering as part of God’s plan or as part of\ntheir generations of struggle, they are less likely than Whites to discuss death, engage in advance-care\nplanning, or utilize hospice to diminish that suffering (Braun et al., 2008; Bullock, 2011; Johnson, et al., 2008; Mazanec et al., 2010; Rhodes, et al., 2007). They are more likely to desire life-support and other aggressive treatments as a family unit (Bullock, 2011; Welch et al.,\n2005; Kwak & Haley, 2005; Johnson et al., 2008). African Americans have less exposure to hospice\ninformation, are more likely to withdraw from hospice programs once enrolled (Johnson, Kuchibhatla, Tanis &\nTulsky, 2008), and are less likely to return (Kapo, Macmoran & Casarett, 2005). Such decisions may be\ndue to health literacy rather than race, with increasinghealth literacy resulting in greater acceptance of\ncomfort care (Volandes et al., 2008).","Minorities make little use of hospice, often because of lack of knowledge about hospice or palliative care, family-centered cultures, and preferences for more aggressive end-of-life care than hospice allows. The authors conclude that future research should include a search for theoretical and causal mechanisms; prospective\nlongitudinal investigations; diverse patients, conditions, contexts, and settings; methodological diversity and rigor; and interdisciplinary, culturally sensitive interventions."]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Evans et al",2012,"Systematic Review of the Primary Research on\nMinority Ethnic Groups and End-of-Life Care\nFrom the United Kingdom","Journal of Pain and Symptom Management","To systematically review original studies of minority ethnic groups\nand EoL care in the U.K. and appraise their quality.","UK",null,null,"Review",{"$nulls":3},"NA","NA","Searches were carried out in 13 electronic databases, eight journals, reference lists, and the gray literature. Studies of minority ethnic groups and EoL care in the U.K. were included. Studies were graded for quality and key themes\nwere identified.",{"$nulls":3},"Forty-five studies met inclusion criteria. Study quality was good on average. Identified key themes included age structure; inequality by disease group; referrals; caregivers; place of care and death; awareness of services and communication; and cultural competency. Strategies described for the reduction\nof inequities were partial and reactive. The format of 10 studies prevented quality grading; these were, however, reviewed as they provided unique insights. Variations in terminology and sampling frames complicated comparison across\nstudies.\nConclusion. The results highlight the multiple and related factors that contribute to low service use and substandard quality of services experienced by\nminority ethnic groups, and the need for authors to clarify what they mean by ‘‘culturally competent’’ EoL care. "]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Feldstein et al",2008,"Integrating Spirituality and\nCulture with End-of-Life Care\nin Medical Education","Clinical Gerontologist The Jounral of Aging and Mental Health","This article describes the experiences and challenges\nof successfully introducing a curriculum on spirituality and multicultural literacy into the required Family Medicine Clerkship at Stanford\nUniversity School of Medicine.","USA","Not specified","Medical students","Intervention evaluation","Language barriers, cultural taboos, value systems, different conceptualizations of pain and reincarnation, language of medical culture, medical culture rooted in Western thought can lead to misunderstandings, medical understanding of disease can conflict with spiritual or cultural beliefs, trust and agreement to negotiate successful treatment, within cultural or spiritual context.","Realize that the primary task for physician is to listen and respond to the concerns of patients and families without necessarily having to make it better, and to also understand those who insist on life-sustaining treatment that may conflict with the physician’s advice (Lo, 2002; Curlin, 2005). Such understanding requires knowledge of the patient’s values and beliefs. For example, with end-of-life care, doctors need to be aware of the patient’s cultural and spiritual beliefs and the possible need to find meaning in life, to conduct a life review, to forgive, and/or to leave a legacy.\nHeartfelt sincerity and respect for the patient, coupled with principles of cultural and spiritual competency, will help students respond effectively to almost any barrier in communication.","Educators, universities, educational institutions, medical educational institutions","Educational\nThis article describes the experience of successfully introducing a curriculum on spirituality and multicultural literacy into the required Family Medicine Clerkship at Stanford\nUniversity School of Medicine.","Rather than a program of separate classes on spirituality, culture, and end-of-life care,this intervention integrates spirituality and culture with EoL care into the fabric of medical school curriculum.  Includes a matrix of learning activities that address: 1) a cross-cultural approach to spiritual needs, 2) spirituality at the end of life, 3) the impact of cultural values at the end of life, 4) the ways in which cultural and spiritual needs interact at the end of life, and 5) the interface between medical culture and a patient’s culture.\nCurriculum uses a \"discovery model\" that inquires into each student's personal experience and values.","Curriculum presented togroups of 8 to 10 medical students dur- ing their required 4-week Family Medicine Core Clerkship. The curricu- lum consists of four hours of classroom instruction, directed readings, exercises performed in the clinic, and a written assignment submitted at the end of the clerkship. Presented to approx. 500 stu-dents from a wide variety of cultural, ethnic, religious, and scientific backgrounds who have differing opinions about including spirituality in their role as a physician.\nStudents  led through a discussion of spirituality and meaning, reflected on a time in their own life that was spiritual or deeply meaningful, understand how spirituality is multidimentional and part of the shared human experience, learn to identify patients to take a spiritual history, self awareness and self care for the students through discussions, daily journals and observing own spirituality","During the month of Ramadan, a Moslem patient did not eat or drink\nduring daylight hours and therefore did not take his prescribed medications three times a day. Although his condition worsened, the prescribing physician did not think to ask about the patient’s religious practices, and the patient did not want to disclose this information to a doctor because of\ntheir cultural differences.  A Buddhist family refused their physician’s request for an autopsy, even after much insis- tence. A family member explained that there must be several days of rit- ual after death for the spirit to transit to the next stage of existence. \nOne example is a Vietnamese elder who refused pain medication because he believed that by living through pain he could eliminate negative karma and be reincarnated into a better life.\nIllness may be an inbalance of hot, cold or yin and yang.  Others may see it ias a curse requring spiritual healing.","A Chinese son did not allow physicians to tell his mother she had cancer in order to protect her from the diagnosis. One member of the African-American community expressed concern that advance directives are “just another way for the white community to minimize services to the black community.” Filipino family demanded that the doctors do everything possible to keep their son alive so that God could work a miracle, and “allow for God’s timing.” A Mexican-American veteran with strong Catholic beliefs was close to death and began to report many religious dreams. The medi- cal team asked a Catholic priest to come see the patient. However, the priest was not Hispanic and did not speak Spanish, nor appreciate how this patient’s dreams were interpreted within his cultural context. As a result, the priest missed an opportunity to share the meaningful content and cultural significance of these dreams with the patient before he died.\nJewish family refused a similar request for autopsy saying it would violate the holiness of the body, which belongs to God.","Integrating teaching of spirituality and meaning, cultural values has been challenging but rewarding.  The req. program prepares students to identify and respond to their patents' cultural and spiritual needs, as well as their own, particularly in EoL care.  Further goal is developing an expanded multiyear curriculum that interweaves spirituality, culture and EoL care into a matrix of learning and activities.  Students will need more opportunities to discuss a variety of clinical vignettes and their own personal experiences with these topics. Case examples will need to blend cultural and spiritual assessment with issues related to end of life care. Medical school classes, including basic sci- ences, can incorporate topics of culture and spirituality. In classes on eth- ical decision-making, cases could be presented that reflect a variety of values, beliefs, and ethical systems. In standardized patient exams, stu- dents can be evaluated on their ability to identify and respond to patients’ spiritual and cultural concerns.\nStudents need more time and dis- cussion to develop greater awareness of their own default choices and habitual ways of interpreting behavior, and to appreciate how their per- sonal beliefs and behavior may affect patients and families. These learn- ing opportunities in the curriculum can make the difference between a traumatic ending and a good death.\nAssumptions should never be made about an individual because of their ethnicity. ","The four ways that Spirituality, Culture, and End-of-Life Care interface: (1) Spirituality and Culture, (2) Spirituality and End-of-Life Care, (3) Culture and End-of-Life Care, (4) Spirituality, Culture, and End-of-Life Care. In this illustration, spirituality includes religion.\nStudents are encouraged to explore their past experience within the framework outlined above, to provide examples that are mean- ingful and relevant to student perceptions."]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Firth",2005,"Diversities in approach to end-of life care","Journal of Research in Nursing","To contribute to the growing awareness of the need for more research and info about the healthcare and palliative care needs of minorities in the UK, as there is little material available.  Reviewed Chattoo et al.'s (2002) comparative study of white and Asian cancer patients and families to explore universal issues of identity.","N/A","Minority ethnic groups","White and Asian cancer patients and their families","Case study review","Terminology issues that risk creating homogenous 'others' and stereotyping; 'cookbook' or 'fact-file' approach, which reifies cultural and religious differences and ignores intra-cultural and individual variations\nWestern attitudes to medicine and bioethics are culturally determined. \nCultural differences btw truth telling and disclosure with ethnic patients.\nIn many cultures, home is where deathbed rituals occur, but barriers include low referrals, poor access to services, no bereavement services which are adequate, poor training due to lack of appropriate material and personnel.\nIssues that arise as a result of primacy of the family over the individual and assumptions of paternalism re: appropriate treatment for the dying and disclosure truth-telling and decision making can create moral dilemmas with minority ethnic patients.","Recognize that in many cultures, there are different concepts of the self, embedded in social relations, primacy of family over individual, ethical commitment to protect the patient impacts on a range of issues, through communication, disclosure and truth-telling.\nExploring holistic care, spiritual and religious issues openly and honestly as and when patients and families need them.\n","Healthcare, palliative care staff","NA","NA","Review of a study","For example, Gardner’s (2002) and Firth’s (1997) ethnographic studies of Bangladeshis and Hindus could be cited as contributions to universal under- standings of meaning-making, spirituality and religiosity in a context of cul- tural change; while Chattoo et al.’s (2002) comparative study of white and Asian cancer patients and families explores universal issues of identity."," The main thrust of the paper is the recognition that many cultures have different concepts of the self, embedded in social relations (Tse et al., 2003). The primacy of the family over the individual, and the ethical commitment to protect the patient impacts on a whole range of issues, such as communication, disclosure and truth-telling, advance directives and decision-making. Such attitudes are common in Southern Europe as well as Africa, the Middle and Far East (Gordon and Paci, 1997). Relatives may expect to make decisions on a patient’s behalf, to maintain hope and quality of life. Protecting the patient from the truth overrides patient auto- nomy and the right to know, in accordance with their perspectives on beneficence, non-maleficence, fidelity, respect and justice. Gardner argues this is not just paternalism but ‘deeply held beliefs surrounding individual choice and “rights” [and]... concerning the primacy of the family, gender relations, and Bengali ideas of appropriate treatment for the dying’ (Gardner, 2002: 242).\nMany cultures consider home as a sacred place with the family gathers to say farewell and provide appropriate deathbed rituals.","Different approaches to EoL enhances dialogue on life and death in society as a whole.  Spiritual and religious issues need to be explored openly and honestly as and when patients and families need them.  \nRecognize that relatives may expect to make decisions on patients' behalf, to maintain hope and quality of life.  Protecting the patient from the truth overrides patient auto- nomy and the right to know, in accordance with their perspectives on beneficence, non-maleficence, fidelity, respect and justice. Gardner argues this is not just paternalism but ‘deeply held beliefs surrounding individual choice and “rights” [and]... concerning the primacy of the family, gender relations, and Bengali ideas of appropriate treatment for the dying’ (Gardner, 2002: 242)."]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Gerdner et al",2007,"The Circle of Life.  End of Life Care and Death Rituals for Hmong-American Elders","The Journal of Gerontological Nursing","In this article, we provide an overview of the traditional spiritual beliefs related to life and death with implications for end-of-life and postmortem care.","USA","Hmong-American Elders","Hmong-American Elders","Primary research","Misunderstanding of structure and role of clan and family in decision making process, the hindering of rituals which exacerbates stress and bereavement","Care staff should use open, non-judgemental approach in discussing elder and family preferences specific to spiritual beliefs and practises related to EoL and postmortem care, recognition and support of importance of interdependence w/ family and clan structure.\nIf contrary to custom the death occurs in the hospital, it is impor- tant to allow family the privacy and time to express their grief.\nUnderstanding of cultural beliefs and rituals promotes empathy and compassion, support and encouraging for these rituals facilitates family's grieving process allows family to honor deceased and understanding cultural grieving practices and rituals facilitates nurses' ability to identify atypical grief.","Medical staff, gerontological nurses","NA","NA","Field experiences, literature review and consultation with Hmong elders to enhance and validate understanding.","Dying at home is important for elders who retain traditional beliefs of animism and ancestor worship due to the presence of xwm kab (house spirit altar), which is maintained by the eldest male. This altar is intended to serve and appease the household spirits charged with the welfare of the home and its residents.\nThere is also an important com- patibility issue associated with the xwm kab (house spirit altar).  Following death, family usually grooms body of deceased person in a simple way, as it is believed cutting or dismembering the body will delay reincarnation and result in negative consequences to the soul in next life.\nAnother spiritual belief under- scores the interrelationship be- tween a person’s souls and his or her body. In Laos, it is customary for the Hmong to bury the placenta or “birth coat” of the newborn under the earthen floor of the home. Upon death, one of the person’s souls will return for the placenta, a necessary requirement for reunion with de- ceased ancestors ","Family role and decision making - group support servces as a protective factor during crisis and los.  Clans and interdependence and strong family tradition.\nAs is customary, the family and clan gath- ered from across the country and remained in constant vigil. Not only does this gathering provide support for the dying person and family, but also it is believed that the dying per- son will impart “wisdom and bless- ings” to those who listen.\nTraditionally, as death approaches, the elder is dressed in khaub ncaws laus (clothes for the old, a euphe- mism for burial clothes). ","EoL care: Decisions that affects one family member will systemically have a direct or indi- rect effect on all family members. Therefore, decisions are made as a group under the supervision and guidance of the eldest male. The clan leader is consulted when there is an unresolved dispute. Health care providers must be cognizant of the decision-making structure preferred by Hmong-American el- ders and their families.  Traditionally, it is believed that discussing or making plans in ad- vance of a person’s death will “un- lock the gate of the evil spirits,”  causing the person to die prematurely.  Direct reference to death is avoided. The strength of this belief is likely to affect the willingness to plan advance directives and to dis- close a terminal diagnosis.  When circumstances warrant the need to discuss advance directives, it may be helpful to seek the assistance of a cultural broker. Generally, the most culturally responsive approach is to arrange a care conference with the family members.\nDying at home is important for Hmong-Americans - ancestor worship.  House spirit alter to appease housold spirits with welfare of home and residents.  ","First, an understanding of these cultural beliefs and rituals promotes empathy and compassion (Schriever, 1990). Second, support and encouragement for these ritu- als facilitates the family’s grieving process and their efforts to honor the deceased (Clements et al., 2003). When these rituals are hindered, stress and bereavement are ampli- fied (Eisenbruch, 1984). Third, an understanding of cultural griev- ing practices and rituals facilitates nurses’ ability to identify atypical grief (Eisenbruch, 1984)."]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Graham et al",2013,"Traditional Healers’ Views of the Required\nProcesses for a ‘‘Good Death’’ Among Xhosa\nPatients Pre- and Post-Death","Journal of Pain and Symptom Management","Objectives. To provide more appropriate multidimensional, culturally suitable care at the end of life; this study aimed to identify the care needs and cultural practices of Xhosa patients and families at the end of life, from the perspective of traditional healers.","East London, Eastern Cape, South Africa","Xhosa ethnic group","Xhosa traditional healers","Primary research","Language issues and choice of words to describe death - may have implications, reluctance in managing death directly in professional capacity as traditional healers due to fear of blame by family and negative ipact of death on their practise.","If health care workers are able to facilitate the gathering of family at the deathbed, they may provide a meaningful opportunity for restoration of relationships, expression of wishes, and peaceful acceptance of death.\nThe general isiXhosa and isiZulu words for death are avoided in relation to people and are only used for other forms of life. This reflects the concept that people do not die but transition from living to ancestor. Euphemism, therefore, may not only represent a form of kind speech but may reflect the deeper underlying philoso- phy of the afterlife. ","Clinicians","NA","NA","Interviews and focus groups with traditional Xhosa healers","Although the specifics of the rituals differed from clan to clan, and across families, therewere common elements of cleansing the home, sequestration of the family, rituals to release the spirit, and then to call the spirit back home. Not adhering to the clan rituals, or the wishes of the deceased, were described to have considerable consequences for those who remain alive.","The African philosophy of ubuntu is explained through the translation of umuntu ngu- muntu ngabantuda person is only a person through his interaction with other people.30 Consequently, if health care workers are able to facilitate the gathering of family at the deathbed, they may provide a meaningful opportunity for restoration of relationships, expression of wishes, and peaceful acceptance of death.  The concept that a dying person will be- come an ancestral spirit has an impact on death transactions, with weight placed on the need for continuity as the spirit continues to act in the world beyond death. ","Fear of blame by traditional healers on handling death. traditional healers de- scribed practices necessary before and after death that were necessary for a good death. Before death, they placed focus on the relief of psychosocial suffering, importance of the spoken word at the deathbed, and the value placed on relationship and community with the living, which continues in a spiritual way after death. After death, the healers described the importance of the post-death ritual. "]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Gutheil and Heyman",2006,"\"They Don't Want to Hear Us\"","Journal of Social Work in End-Of-Life &\nPalliative Care","This study used focus groups to understand Hispanic el- ders’ and adult children’s concerns about end-of-life planning. ","New York City, USA","Hispanic","Hispanic elders and adult children of Hispanic elders","Primary research","Challenges in communication about EoL issues is the insistence by both elders and adult children that their children/parents do not want to have discussions about EoL care.\nHispanic elders confusion of medical system and distrust of medical system, lack of communication re: medical care.\nPatient's family as \"initial filter for cntact btw patient and doctor\".\nDiscomfort with topic, burdens placed on designated agents, lack of potential surroates - did not want to burden their children w/ the responsibility, desire to protect their children re: EoL issues.\nTalking about death may bring death on earlier.\nEoL considered almost taboo to discuss","Providers must understand and respect the role of family members, values, spiritual beliefs and hierachies within these elders' cultural beleifs.\nRole of extended family.  A good assessment- social workers should assess family's decision making style and the roles the adult children play in their families. \nSocial workers can help families find ways to talk about end-of-life concerns. This may be done by helping family members consider why these discussions are so difficult, modeling styles of communication, helping family members find ways to begin the conversation, and as- sisting family members with diverse concerns and perspectives to listen to each other.\nBoth older adults and adult children may need help understanding that not having direct and honest conversations may limit the child’s ability to accurately represent the parents’ wishes in the future, if he or she is called upon to do so. For the parent wishing to avoid burdening a child, it may be helpful to consider how not having the necessary discussions may result in greater burden in the future.\ncreate a safe space to help adult children and their parents find ways to have the conversations that both clearly recognize as important.","Clinicians, medical professionals","NA","NA","Literature review, 2 focus groups, one with Hispanic elders and one with adult children of Hispanic elders and semi structured interviews in a group setting","Hispanic participants relied on their religious convictions to provide strength in dealing with end-of-life concerns. Hispanic groups have cited religion as a vital influence on decisions regarding advance directives.\nSpirituality and religious issues were also raised during the discus- sion. While Hispanic elders said they turn to their children first, they said that God’s will is paramount. They often turned to their church, pastor or priest. \nDiscussion of an illness was often referred to as God’s will.\n\"Fate\" jinxing the future.","Lack of clear understanding about EoL planning impacted by cultural issues, language issues, spiritual concerns and values.\nHispanics were less knowledgeable about living wills, a type of advance directive, than African Americans and non-Hispanic whites. They used self-reported measures of knowledge to identify the influence of ethnicity on knowledge about advance directives. Romero and colleagues found that Hispanics were less likely than non-Hispanics to correctly define either a living will or health care proxy. They also acknowledged that “knowledge . . . potentially can be modified by intervention and proactive measures” (p. 298). McLaughlin and Braun (1998) underscore the importance of understanding the values of a cultural group when applied to health care decision making. Talking about death may bring death on earlier.\nimportance of cultural issues, particu- larly issues of truth telling in Hispanic families. One participant ob- served, “This is classic of the Latino family, the hiding.”","Elders: centrality of the family, elders rely on their children when making major decisions, EoL planning is considered as such decision, but elders did not want to burden their children (communication issues).\nCultural issues of truth telling in Hispanic families.  \nControl and choosing who will speak on behalf of elder - decision making - health care agent.  \nAdult children: family-related concerns, burden-related concerns, worry because they know their parents don't want to burden them.  \nPotential for family conflict re: decision making about a parent due to diff. relationships and diff. views.  Placement of blame.  Lack of communication and discomfort and overall reluctance with EoL topic and discussion btw adult children and elders.","These included family connections and hiding problems for the elders and family roles and taboo topics for the adult children. Many more themes clearly over- lapped both groups in how they were approached and the language used to discuss them. These overlapping themes included communication, control, burden, spirituality, religious issues, and family issues.ruth telling and taboo topics are also part of a broader theme: communication and lack of communication. While elders and adult children approach the topics from different direc- tions, they are talking about aspects of the same thing. These focus groups of unrelated Hispanic elders and adult children actually addressed com- mon themes, albeit at times from differing perspectives."]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Halm et al",2012,"Broadening Cultural Sensitivity at the\nEnd of Life:  An Interprofessional Education Program Incorporating Critical Reflection","Hoslistic Nursing Practise","Using a pre-post design, this pilot study aimed to evaluate the impact of a 2-stage educational program on enhancing clinician’s knowledge and comfort in addressing and honoring diverse end-of-life care beliefs, as well as developing higher levels of cultural competence.","USA, regional community hospital in the Pacific Northwest","NA"," interprofessional team members caring for culturally diverse patients/families at the end of life.  nurses, certified nursing assistants, social workers, chaplains, care manager, pharmacists, and physicians) practicing on the oncology unit.","Intervention","Language barriers, lack of translation services for information, lack of knowledge about cultural issues\nLack of culturally and linguistically appropriate services\nNot enough time for reflection and practical experieces w/ culturally diverse patients and families at the EoL by medical members","Becoming culturally competent to affect a positive patient experience at the end of life is a process nurses and all health care professionals must continually nurture to evolve along the intercultural continuum toward a state of adaptation. With such vast diversity, it would be a daunting task to learn all the practices and beliefs that cover all of the cultural groups of people currently residing in the United States. However, to be effective, health care professionals need to familiarize themselves with the needs of ethnically diverse populations or for those in which they regularly care for. With this knowledge, health care professionals must also take into consideration that not all members of a specific culture may adhere to all of the generalized beliefs of that culture. Assessment of the situation is the key to establish trust and provide quality care that is respectful of the patient and families’ wishes.4\nTechnology - translation services, internet resources\nIncrease diversity through organizations by hiring and retaining multi-cultural health professionals\nCommunicate, learn and change","Medical professionals","Educational: In service session re: EoL care beliefs,practises and preferences of the Latino, Russian and Micronesian cultures, then partcipated in critical reflection sessions to dicuss EoL cultural cases.  Outcomes - cultural competence, attitudes, knowledge, self perceived comfort","The first stage of the intervention focused on an in-service session for all interprofessional team members (nurses, certified nursing assistants, social workers, chaplains, care manager, pharmacists, and physicians) practicing on the oncology unit. \nThe second intervention stage involved critical reflection sessions. Critical reflection was chosen as an additional strategy because it has been identified as imperative for transformative learning—learning that results in new or transformed perspectives of personal assumptions, attitudes, and beliefs.25 Such perspective transformation leads to a readiness to apply learning from the new lens, paving the way to long-lasting changes in behavior.26 , 27 ","Twenty-four interprofessional team members practicing on a combined medical-surgical oncology unit attended an in-service session on the end-of-life care beliefs, practices, and preferences of the Latino, Russian, and Micronesian cultures and then participated in critical reflection sessions where culturally specific end-of-life care cases were discussed using a structured dialogue guide. Outcomes measured were cultural competence using the Intercultural Development Inventory, Frommelt Attitudes Toward Caring of the Dying, knowledge of cultural beliefs/traditions, and self-perceived comfort in providing culturally sensitive end-of-life care.","Language in practises re: in its standards on patient rights that hold hospitals accountable for identifying and incorporating a patient’s cultural, religious, or spiritual beliefs and practices into care at the end of life..\nThe 2-stage educational intervention was successful in enhancing the team’s perceptions of not only their understanding of the end-of-life beliefs, values, and preferences of the Latino, Micronesian, and Russiancultures but also their effectiveness in providing culturally sensitive end-of-life care for patients and families. Despite these perceptions, no differences were found on the cultural beliefs/practices knowledge score from pre- to postintervention measures. ","Comfort with providing culturally sensitive end-of-life care significantly increased after the intervention period, most likely due to enhanced perceptions of cultural beliefs/practices knowledge of the 3 cultures of focus. These findings may also be influenced by the fact that team members self-selected into the study, and, as a result, may have been more motivated to grow in this area. In this study, characteristics associated with significantly more positive attitudes toward caring for the dying (as well as higher cultural beliefs/practices knowledge) included discipline (nurses), highest degree (bachelor’ s), death and dying education (on-the-job or continuing education and perceived adequacy of education), cultural competence education (on-the-job or continuing education), and self-perceived knowledge, skills, and comfort in providing end-of-life care.","This 2-stage educational program did not significantly advance the team along the intercultural development continuum, nor did it significantly change knowledge and attitudes, likely due to the small sample and that maturity in cultural competence, evolves over a longer period of time. Educational programs that incorporate critical reflection sessions that promote interprofessional dialogue and learning, however, are promising practices for advancing cultural competence that are worthy of more rigorous study.\nComfort with providing culturally sensitive end-of-life care significantly increased after the intervention period, most likely due to enhanced perceptions of cultural beliefs/practices knowledge of the 3 cultures of focus.\nhealth care professionals need to familiarize themselves with the needs of ethnically diverse populations or for those in which they regularly care for. With this knowledge, health care professionals must also take into consideration that not all members of a specific culture may adhere to all of the generalized beliefs of that culture. Assessment of the situation is the key to establish trust and provide quality care that is respectful of the patient and families’ wishes.4","The group profile revealed that the vast majority of interprofessional team members were not from an ethnic minority and lived their formative years (ie, up to age 18) in North America. Only 6.5% of the interprofessional team members had ever lived in another country. \nTransformative learning is often initiated by an unusual or significant trigger event, or feeling of intense inner discomfort26,42—a state that could be provoked by caring for a patient at the end of life from a culture different than one’s own. Using critical reflection interprofessional team members can ask why a particular clinical situation is uncomfortable or unfamiliar. By asking why, multiple perspectives are uncovered that create explanations that become relevant for particular clinical contexts.28"]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Hanssen and Pedersen",2013,"Pain relief, spiritual needs, and family support: Three central areas in intercultural palliative care","Palliative and Supportive Care"," The purpose of this study was to draw out and coalesce the topic-specific information found in research literature regarding the provision of culturally sensitive palliative practice.","Norway","NA","Healthcare providers","Review","Healthcare providers may be uncomfortable taking account of patient's spiritual and religious needs\nIt is more difficult to assess the level of pain in ethnic minority patients, and healthcare providers may become frustrated and interpret pain symptoms as fabrication. These patients are more likely to receive inadequate pain medication. Physical symptom management has become the priority in palliative care, but pain must also be viewed from the perspective of its social, cultural, and spiritual significance. ","Understand the significance of family suppot, awareness of religious demands\nUnderstanding existential and spiritual needs\nHC providers working w/ ethnic minority patients need help and support re: formal education and in-service programs to give physical and and spiritual care\none needs to remember that “there are no cultural facts, only cultural possibili- ties, and . . . as much as there is inter-group variation there may be important intra-group variations in be- haviors and belief around needs and health related experiences” (Iliffe & Manthorpe, 2004, p. 288). Ev- ery patient, therefore, needs to be respected as an in- dividual, and not expected to think and act according to the healthcare providers’ “cultural” expectations.","Healthcare, palliative care staff","NA","NA","This was a literature study and Gadamerian hermeneutic text analysis."," One needs, for example, to realize that hailing from a predominantly Muslim country does not necessarily mean that the patient is a Muslim. Furthermore, all mem-bers of a family may not belong to the same religion. It is important to ask the patient about his beliefs and philosophy of life.  HC providers may not be comforable to address patient's religious or spiritual needs.Death is not to be discussed with Muslim patients, whereas Sheikh and Gatrad (2000) hold that death is not a taboo subject in Muslim communities. Spiritual peace is primary at the time of death for Hindus and Buddhists (DeMar- tinis, 1998), and it is important to Buddhists to know, as they need to consciously prepare themselves for their impending death (Forrest, 1983).\nNorwegian healthcare providers have little knowl- edge about religions other than their own, aside from some superficial information about Islam.\nKhoshrouy-Sefat (1985) claims that death is not to be discussed with Muslim patients, whereas Sheikh and Gatrad (2000) hold that death is not a taboo subject in Muslim communities. Spiritual peace is primary at the time of death for Hindus and Buddhists (DeMar- tinis, 1998), and it is important to Buddhists to know, as they need to consciously prepare themselves for their impending death (Forrest, 1983).\nHindu “[ f ]amily members are likely to be present in large numbers as death nears. Chanting and prayer incense and various rituals are part of the process”","Collectivist values may lead to an other-reliant and dependent coping style. Many dying patients wish to be cared for at home by their families, but as the patient often has complex needs, the family may not be able to cope with the patient’s care.\nFilial duty is an important aspect of a collectivistic society’s morality. In-group obligations are intrinsic facets of any collectivistic society’s “honor code” or set of rules group members are expected to follow (Wikan, 2003). A person’s honor depends on the col- lective’s evaluation of that person’s acts, and to act in conflict with the honor code creates public disap-proval, dishonor, and shame. Strong filial duty and moral obligation toward ill family members may cre- ate a feeling of shame if one is unable to cope with the situation at home. It is important to be perceptive to whether the carer needs more help and support from home care nurses, irrespective of the carer’s actively communicating such needs. \nblack Caribbeans tended to see pain as representing a trial or test of faith. “This meaning was associated with confirmation and strengthening of religious be- lief and loyalty to God” (p. 354). Another example is the Maori, who tend to hold to a four-faceted health construct: 1) spiritual aspects, 2) thoughts and feel- ings, 3) physical aspects, and 4) family and commu- nity aspects","Collectivist values may lead to an other-reliant and dependent coping style. This and religious demands may cause the family to rally around the patient. Many dying patients wish to be cared for at home by their families, but as the patient often has complex needs, the family may not be able to cope with the patient’s care.\nCultural Perception and Expression of Pain\nIntercultural differences in expressions of pain btw different Asian cultures\nCultural Expression of Pain and HC\n“cultural differences in emotional expression and stereotypes about pain . . . influence the clinician’s interpretation and expectations regarding pain severity. This is possibly due to conscious and unconscious bias on the part of the clinician and patient, or subtle differ- ences in cultural expressive cues (i.e., body language), since an individual can more readily re- cognize emotions expressed in the style to which they are accustomed.”\nExistential and Spiritual Needs\npatients may experience illness as spiritual or psy- chosocial aspects of life, something that tends to be excluded from the clinician’s equation\nFamily Support is important re: decision making process\nEven when offered help from  nurses, patient and family often want to manage the caregiv- ing themselves or choose to receive as little help as possible. Cause maybe care for dying relatives at home “is a matter of honor and integrity for many families of different cultures: failure to do so creates stigma and loss of face”","Formal education and in-service programs are needed for healthcare providers, together with empirical studies regarding how to achieve more culturally appropriate care in intercultural palliative practice. The immigrant population needs to be educated about cancer and the various kinds of palliative and hospice care offered in the society in which they now live."]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Heyman and Gutheil",2010,"Older Latinos’ Attitudes toward and Comfort with End-of-Life Planning","Health & Social Work ","The purpose of this study was to determine which of two educational interventions delivered in Spanish would influence Latino elders’attitudes toward and comfort with end-of-life planning in comparison with a control group receiving only standard information routinely provided.","USA","Latinos","109 Latino elders","Intervention","EoL issues can be taboo and difficult to discuss w/ clients\nMisunderstandings of family dynamics and systems of care\nLanguage barriers\nLack of culturally sensitive ","Bilingual staff knowledgeable about EoL planning, advance directives and the range of issues that need to be addressed.\nCommunication of EoL planning with family.\na member of the health care team or another indi-\nvidual versed in end-of-life planning should carve out time to talk about these issues with elders. It is recommended that this conversation include top- ics such as information on advance directives; the role of the health care agent; medical, legal, and value issues; the importance of advance planning; and how to begin doing this planning. \nSocial workers would do well to become informed about all aspects of end-of-life planning so that they are able to effectively inform clients. In addition, social workers may need to collaborate with other professionals to advocate that clients receive this information through a conversation in the language of their choice rather than by printed material alone\nIt is important to respect the power of the topic and not attempt to do “everything” in one session.","Medical professionals, social workers, nurses, home care providers, nursess","Educational","The control group received the standard informa- tion routinely provided by the home care agency, which consisted of the Newyork State Health Care Proxy form and instruction booklet in Spanish and english. In addition to the standard information, Conversación A and Conversación B received a one-to-one protocol in their homes.These proto- cols provided identical basic information and took between 45 minutes to one hour to complete. during the conversation, the intervener provided information on each of the topics and engaged the individual in the discussion through dialogue and questions. Conversación A was deemed to be mod- erately culturally sensitive because it was translated into and delivered in Spanish. Conversación B was deemed intensive because, in addition to being in Spanish, it included themes identified through focus groups (see the Protocol development section and Table 1). Material specific to the intensive protocol was introduced through statements or questions and probes. For example, the intensive intervention stated that some people prefer to rely on their doc- tor to make decisions regarding care and asked the individual what his or her feelings were about this (control). In discussing why it is important to plan in advance, it was noted that loved ones may not feel so great a burden if they are asked to make decisions regarding care (burden).Probes to broach the topic of family relationships included the following:concern about which child would be viewed as a favorite and concern about whether family members would agree with one person’s decision.","This study used a posttest-only control group design.\n109 elders agreed to participate in the study. elders who agreed to participate were randomly assigned to one of three groups: Conversación A (n = 37), Conversación B (n = 36), and a control group (n = 36). ","In addition to language, the literature identi- fies a range of issues of importance in end-of-life planning for Latinos, including fatalism, religious– spiritual beliefs, control–autonomy, and social sup- port. Phipps,True, and Murray (2003) pointed out that Latinos may be influenced by “fatalism (the sense that nothing can be done), which may result in not seeking treatment for some illnesses” (p. 121).\nBoth Laws and Mayo (1998) and Luquis and Villanueva Cruz (2006) underscored the potential impact of fatalism on how Latinos deal with medical concerns. religious, spiritual beliefs, and faith have been addressed by a number of authors (Hauser et\nal., 1997; Krakauer et al., 2002; Phipps et al., 2003). Gutheil and Heyman’s (2006) research found that older Latinos often turned to their churches and embraced the concept of God’s will.\nReligion and spirituality was included in Conversación B","A recent study to understand cultural competence (Napoles-Springer, Santoyo, Houston, Perez-Stable, & Stewart, 2005) found that Latinos experienced language-based discrimination related to their medical encounters.","Attitudes toward advance planning scores were significantly higher for both intervention groups compared with the control group\nThe results of this study suggest that it may be pos- sible to positively influence both attitudes toward and comfort with end-of-life planning among older Latinos receiving home care, through the use of a one-to-one protocol that is delivered in Spanish. For the older Latinos receiving home care who received the Conversación A intervention, both attitudes toward and comfort with end-of-life planning were significantly higher than they were for participants in the control group.This protocol provided informa- tion and discussion about end-of-life planning but, although given in Spanish,did not include additional material considered culturally sensitive based on the focus groups and literature."]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Ho et al",2010,"Chinese Familial Tradition and Western\nInfluence: A Case Study in Singapore\non Decision Making at the End of Life\n","Journal of Pain and Symptom Management","To understand how culture affects medical decision making by looking at the case of an eldery Chiense Singaporean w/ metastatic cancer, whose family and doctors had conflicting roles of care.  The former was adamant on treating the patient’s disease with an untested drug, whereas the latter aimed to treat his symptoms with more conventional medication. Drug-drug interactions prevented treatment with both. n an analysis of what this entails, we attempt to explain the significant and assertive family involvement in the decision-making process and their insistence on using novel medications, having exhausted conventional interventions.","Singapore","Chinese","Elderly Chinese Singaporean","Case study","Physicians sometimes underestimate the importance of filial piety to the Chinese family at the end of life.\nFamily members did not fully accept the terminal diagnosis\nTraditional chinese medicatons may conflict with medical diagnosis.\nElder's children wanted to administer alternative clinically unproven tx they acquired over the internet = basis for tensions btw medical teams and family\nLack of discussion of EoL issues with loved ones","Internet allows family members to be more informed and empowered in EoL decision making \nUnderstand the roles families play in decision making - medical decision making and EoL decisions\nIncreased understanding of the principles of surrogate decision making\nFamily involvement is necessary due to their phyiscal, financial, and psychosocial support.","Medical professionals, doctors","NA","NA","This study examined the case of an elderly Chiense Singaporean with terminal cancer through a case study - examine patient's best interests and examine cultural context to see how culture affects decision making.","Influence of Confucianism:  Family members take up dominant decision making roles whicn included deciding access to medications. Confucian concept of autonomy admits the need for ‘‘en- gaging and interactions in a network of relations with others.’’7 Therefore, illness is taken to be an occasion involving the entire family and not just for the individual, given that such familial decisions have repercussions for all family mem- bers.Through this system, the complexities of decision making for a patient are intentionally shifted away from the individual to the fam- ily. This explains the strong involvement of East Asian families, as seen in Mr. C.’s case, when it comes to care decisions. It is not hard to see why so few patients feel the need for formal election of surrogates or any future care plans for that matter. For example, only 37.2% of Singaporean Chinese elderly agreed that an ad- vance directive was important.29 Many presume family members would act in the same manner as this family had.","Culture's influence on medical decision making - in East Asian culture, benefience, familialism and Confucianism often form the focus of treatment instead.  Family roles in decision making re: medical decisions and EoL issues.  \nInfluence of Filial Piety:  Searching for and bringing tx to treat disease even when diagnosis is terminal.  Associated with Confucian teaching and im-\nbued within Chinese religious beliefs, filial piety asserts a strong influence in cultural decision making in Asian societies. It places an obligatory duty on children to care for their elders, driven in part by an appreciation of the care they had previously received. Another important aspect of filial piety is that family members are often pressured to perform these duties to avoid the disapproval of the rest of the community = \"face\" = personal honor and dignity judged by his or her community","The workings and decision-making behaviors of the Chinese family in an accultur- ated society is in constant flux, seen most prominently in the diverse views of East Asians who have emigrated to Western environ- ments. To provide the most appropriate care, physicians often need to be observant and adaptable to these changes.Family stepped in to take charge of nursing care of patient.  Family persisted in teaching for and bringing in novel drugs to treat disease - filial piety and confucian teachings (obligation, duty) drives such behaviors.his was immediately commenced, and Mr. C.’s symptoms improved. Alongside the medical team, Mr. C.’s family continued its role in nursing and providing the alternative medication. In this, having honored the family’s wishes and having reduced the patient’s dis- tress, we did seem to have arrived at a consensus as to what was in the best interest for the patient. Mr. C. passed away peacefully a few days later, surrounded by his family.\n","Likewise, the role of the physician in this case deviates from that expected in Chinese culture. The traditional Confucian societal structure supports paternalism, built on the respect accorded to physicians.nAs the concept of Western autonomy finds its foothold in the East- ern psyche, this position is increasingly being challenged, especially with the advent of widespread use of the Internet.\nHowever, to separate and categorize cultures into ‘‘East’’ and ‘‘West’’ would miss the large amount of fusion that also takes place. Although the shift toward autonomy in the Asian context is an echo of that seen in the West, this responsibil- ity is often given to and taken up by family members instead, in alignment with Confucian values."]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Hsu et al",2009,"Understandings of Death and Dying for People of Chinese\nOrigin","Death Studies","This article introduces the primary beliefs about ancestor worship, Taoism, Confucianism, Buddhism and traditional Chinese medicine that have influenced Chinese people for thousands of years, particularly in relation to death and dying.","Australia","Chinese","Healthcare professionals, healthcare providers","Discussion paper","Death and dying remain taboo subjects in Chinese communi-ties and families may not discuss these issues for fear of invoking bad luck. Thus information disclosure to Chinese patients, especially those with life-threatening illness such as cancer, becomes an issue for doctors, patients, and families; especially, the belief that cancer is associated with bad luck \nTraditional medicine may conflict with Western methods\nCongested living environments and lack of resources makes death at home difficult","Understanding that Chinese people may try many methods to prolong life and use mixtures of tradition and western therapies.   \nDying at home has special cultural meaning for Chinese patients\nUnderstanding attitudes towards truth telling about cancer - patients prefer being told the truth","Health professionals, doctors","NA","NA","Review of culture and traditions amongst Chinese people on understandings of death and dying","Taoism, Confucianism, and Buddhism are the main three philosophies or religions in Chinese culture. Taoism is considered both a religion and philosophy emphasizing the independence of the individual and connection to natural forces of life, Confucianism provides the moral code or ethics of behavior, and Buddhism contains the rituals of the spiritual life \nTaoist philosophies, such as retribution, Feng Shui, misfortune and bad luck. Because nirvana is the final achievement for human beings, the dying person’s peace of mind at the moment of his=her death is the focus of end-of-life care among Chinese Buddhist people","Dying at home has a special cultural meaning for Chinese patients and their families. \nncestor worship was the original philosophical underpinning of Chinese culture. Chinese people consider the family to be the basic unit of worship, economic activity, emotional support, and prestige\nSignifiance of Filial Piety\nin modern Chinese community, a dying patient is brought home from a hospital when death is imminent and moved into the main hall of the house, which, in Chinese tra- ditions, is the most holy place of the house and where the ancestral tablets are located. Chinese people believe that dying in the main hall of the house enables an individual symbolically to join her=his ancestors represented by these tablets or the family altar (Jochim, 1986). For dying patients, these systems are suggested as useful to relieve the patient’s symptoms or postpone her=his death.","The issues of death and dying are culturally constructed with parti- cular social and historical experiences.  When faced with a life-threatening illness and the possible or subsequent death of a family member, Chinese people may try other methods to prolong life, use a mixture of traditional and western therapies, and look to their traditions and culture to provide support for these methods. In addition, the needs of patients and families for their social, psychological, and spiritual support should be met within their cultural framework. Learning the traditions that emerge from Taoism, Confucianism, and Buddhism is an important way that helps health professionals understand Chinese culture and its people, in order to meet the needs of the dying patients and their families.","TCM provides the dying person with a sense of control and conti- nuity of treatment that leads to an improvement in the physical and mental health of patients receiving palliative care "]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Jang et al",2010,"Willingness of Older Korean-American Adults to Use Hospice","The American Geriatrics Society","the present study explored predictors of willingness of older Korean- American adults (N 5 675) to use hospice.  the study considered predisposing factors (age, sex, marital status, education), potential health needs (chronic conditions, functional dis- ability), and enabling factors (health insurance, accultura- tion, prior awareness of hospice).","Florida, USA","Koreans","Older Korean-American adults","Primary research","Lack of knowledge, unwillingness to use EoL services\nLanguage issues\nLack of awareness","Knowledge, education, chronic conditions, health insurance and higher levels of accultration and prior awareness of hospice, Prior exposure to services promotes openness and acceptance of services.","Healthcare","NA","NA"," Data were col- lected from March through August 2008 in Tampa and Orlando, Florida. The surveys were conducted with Korean adults aged 60 and older who were able to understand and complete the questionnaire. The survey questionnaires were in Korean and were developed through back-translation and pilot-testing with 20 older Korean adults who were representative of the anticipated sample. Because immi- grant populations are often underrepresented in public da- tabases (e.g., Census data, telephone directories), a variety of sources were used for recruitment, including specific or- ganizations and a telephone directory. ","The survey sites included 25 local Korean churches, two other groups with a religious affiliation - not explicitly considered besides in recruitment for participation","Despite the value of hospice in ensuring quality of life as long as possible, few members of racial and ethnic minority groups know about EOL care options and use such services.\ncultural beliefs that may influ- ence perceptions and attitudes toward EOL care such as filial piety and filial expectations need to be addressed in the programs.","Nearly three-quarters of the sample answered yes to the following statement and question, ‘‘Hospice is a program that helps people who are dying by making them feel comfortable and free of pain when they can no longer be cured of their disease. If you needed hospice services, would you use them?’’ A greater willingness was observed in younger persons, those w/ higher education, chronic conditions, health insurance and higher levels of accultration and prior awareness of hospice.","The present study highlights the role of prior awareness in shaping individuals’ attitudes toward services, calling attention to a need for community education and outreach programs for racial and ethnic minorities, with specific emphasis on dissemi- nation of information and greater awareness of hospice services. "]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Johnson et al",2005,"The Influence of Spiritual Beliefs and Practices on the Treatment Preferences of African Americans: A Review of the Literature","The American Geriatrics Society","pirituality is an important part of African-American culture and is often cited as an explanation for the more- aggressive treatment preferences of some African Ameri- cans at the end of life. This paper reviews the literature on spiritual beliefs that may influence the treatment decisions of African Americans.","NA","African Americans","Study populations included community- dwelling older people, nursing home residents, hospitalized patients, and those with human immunodeficiency virus (HIV)/acquired immunodeficiency syndrome, cancer, dia- betes mellitus, and end-stage renal disease.","Review","The belief that God, not doctors determines whether a person lives or dies, and practise of praying for miracles rather than accepting death, may make it difficult for pateints to cope\nLack of communication, lack of understanding of spiritual support","Spiritual beliefs to promote healing, prayer\nHC practitioners should acknowledge, respect, and explore the importance of spirituality to their patients.\nGood communication where providers istening to patients and their families as they share their spiritual beliefs, acknowledging the impor- tance of these beliefs and exploring how these and other belief systems influence their understanding of illness, guide treatment decisions and goals of care, and serve as a coping resource. Further recommendations include mobilizing ad- ditional sources of spiritual support, including hospital chaplains, pastors, and other church members. In showing respect for and interest in the spiritual beliefs of patients\nand their families, healthcare providers may create an opportunity to explore common ground and common goals of care.\nTrust of HC system, access to care and prior experiences.","Healthcare providers","NA","NA"," databases were searched for relevant litera- ture: Medline 1966 to February 2003, Psych Info 1872 to February 2003, and CINAHL 1982 to February 2003. The subject headings African Continental Ancestry Group (in- cludes blacks and African Americans in Medline) or blacks (Psych Info and CINAHL) were combined with the head- ings spirituality, religion, religion and medicine, terminal are, palliative care, advance directives, withholding treat- ment, euthanasia, and hospice care. The search was limited to adult studies published in English. All resulting abstracts were screened to identify candidate papers, and the refer- ences of candidate papers were reviewed for literature not identified in the search.","Spirituality is an important part of African-American culture and is often cited as an explanation for the more- aggressive treatment preferences of some African Ameri- cans at the end of life.\nspiritual beliefs and practices are a source of comfort, coping, and support and are the most effective way to influence healing; God is responsible for physical and spiritual health; and the doctor is God’s instrument.  Spirituality serves as a source of meaning and purpose, a framework within which people interpret their lives and experiences. These beliefs are especially important for many patients facing illness and death. Studies highlight the role of spiritual beliefs in understanding and coping with ill- ness,recovering from illness, and making treat- ment decisions","The importance of spirituality in African- American culture may partly explain these differences. Spiritual beliefs are often important to dying patients and their families, and studies indicate that patients want physicians to attend to their spiritual as well as physical needs.  Given the growing ethnic diversity of the United States, understanding spiritual beliefs within the context of cultural influence is critical for healthcare providers. ","Spiritual beliefs specifically addressing treatment pref- erences at the end of life include: only God has power to decide life and death, there are religious prohibitions against physician-assisted death or advance directives lim- iting life-sustaining treatments, and divine intervention and miracles occur.\nFor some African Americans, spiritual beliefs are im- portant in understanding and coping with illness and may provide a framework within which treatment decisions are made. Given the growing ethnic diversity of the United States, some understanding of the complexities of culture and spirituality is essential for healthcare providers.","Greater religiosity was associated with negative attitudes toward actively ending life or limiting life-sustaining therapies"]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Jones",2005,"Diversities in approach to end-of-life: A view from Britain of the qualitative literature","Journal of Research in Nursing","To systematically investigate qualitative literature on end-of-life issues and ethnicity/race/diversity, employing qualitative methods and philosophical concepts.","UK","NA","NA","Review","Misunderstandings re: diversity creates new myths/stereotypes/inaccuracies\nLack of trust in medical community\nDecision making styles in relation to EoL - family decision making styles may be misunderstood"," sensitivity to the varying expectations and mix of involvement of patients, practitioners and family (including concepts of extended family and significant others) in end-of-life care. relationship-centred approach to end-of-life care that includes diversity in its wider sense and the participation of all care partners in communication, information- sharing and decision-making.  \nThis is accomplished through the development of competency by healthcare professionals to attend to the age and ethnic diversity, psycho/social/spiritual needs, end-of-life preferences, and ethical and legal concerns of their patients \nNot all members of an ethnic group will routinely follow the beliefs of a specific faith. It is important to recognise that building blocks to understanding include time effects such as age and the life course, cohort effects and generational differences, and histor- ical trends and period effects.","Caregivers, Healthcare providers, policy makers","NA","NA","A database of 119 references was compiled using a range of techniques, including information foraging theory. Qualitative principles, such as ‘citation snowballing’ and ‘data saturation’, were utilised to gather and consolidate the literature. A model of ‘signal and noise’ was employed to balance methodological rigour against the strength of the message itself in the literature included in the final review.","The meaning-making role of the hospice movement’s practice of facilitating mental and spiritual preparation for death establishes a more holistic model on which to begin to develop and extend a more enlightened approach to end-of-life care across spiritual belief systems. End-of-life decision-making is often couched in religious contexts, particularly within networks of social relations in many non-Western cul- tures. The sacred as a social construction is noted as the foundation for a much-needed dialogue amongst cultural traditions.\nA better approach to end-of-life issues and faith or spirituality is found, for one example, in the hospice movement and its goal of facili- tating mental and spiritual preparation for death. Thibault (2003) makes a case for the ‘meaning-making’ aspects of death and dying in the hospice approach.  ","gender, race/ethnicity, class and religion are important factors, but it is social relationships (and chiefly family systems) that matter.  It becomes clear that questions of disclosure of patient information are embedded within a network of social relations in many non-Western and/or non Northern-European cultures.‘Definitions of both quality of life and good clinical practices about truth-telling were at odds with the conventional western ideas of self-reliance, self-expression and control. Another philosophy in direct opposition to western principles such as individualism, was adhered to by patients, especially those who are Asians, who maintain that ‘self’ is embedded within a network of social relations. ","Healthcare providers must recognise that the basic values, principles and assumptions of Western medicine and bioethics are themselves historically situated and culturally determined. The rights of families to medical knowledge and their roles in decision-making are just as valid, inalienable and crucial to the cultural belief systems of many ethic minority communities as patient autonomy models are to Western medicine.\nA common theme emerging through the studies reviewed is a need for sensitivity to the varying expectations and mix of involvement of patients, practioners and families in end-of-life care and the need for information-sharing and decision-making amongst them, along a continuum of health and social care constructed by synthesis and integration of models emerging through this review.\n"]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Jovanovic",2011,"Cultural Competency and Diversity Among Hospice Palliative Care Volunteers","American Journal of Hospice and Palliative\nMedicine","This case study examines the current state of cultural competence in hospice and palliative care in the Greater Toronto Area (GTA). Because of changing demographic trends and ethnic minorities underutilizing hospice palliative care services, this research examined the current state of culturally competent care in a hospice setting, and the challenges to providing culturally competent care in a hospice in the GTA. ","Toronto, Canada","NA","Hospice volunteers","Case study","Health care staff and volunteers who are are inadequately trained in cultural competency, who lack the linguistic abilities to communicate in languages other than English and French and whose breadth of knowledge re: different cultural beliefs and attitudes toward death and dying are weak, if not lacking.Minorities suffer cultural and linguistic bar- riers when trying to access competent end-of-life care. ","HC providers and volunteers and people who work w/ patients should have proper education, training and self reflection when working with multicultural, multilingual, multiethnic, and multireligious population.  \nCulturally diverse, multilingual staff who can deal with different cultures","Healcare providers, health care staff and volunteers","NA","NA","\nA case study was conducted with a hospice and included in-depth interviews with 14 hospice volun- teers. ","When a muslim boy initiated a conversation about his love for God, the volunteer felt really uncomfortable  - clash of cultures between client and volunteer - need more cultural competency"," Cultural competency in health care is essentially about ensuring that people are open to, respectful and cognizant of the various cul- tural differences between people, and most importantly to be knowledgeable about these differences. Cultural compe- tency in health care is not a final destination for health care pro- viders but is an ongoing reflexive journey encompassing a varied and complex initiative on both a personal and corporate level.Ignoring cultural world- views at the most vulnerable period of one’s life is unnecessary and only serves to heighten the stress and anxiety of the patients, their family, and the health care providers."," The findings reveal that volunteers encountered cultural clashes when their level of cultural competency was weak. Second, volunteers revealed there was a lack of adequate cultural competency training with their hospice, and finally, there was a lack of ethnic, cultural, and linguistic diversity among the hospice volunteers."]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Kelley et al",2010,"End-of-Life Care Preferences and Planning of Older Latinos","The American Geriatrics Society","To measure end-of-life (EOL) care prefer- ences and advance care planning (ACP) in older Latinos and to examine the relationship between culture-based attitudes and extent of ACP.","California, USA"," Latinos","Older Latinos","Primary Research","Prefer- ences for limited patient autonomy and family-centered decision-making may hinder older Latinos’ ability to receive desired care in the existing U.S. healthcare system.  Not documenting ACP poses as a problem as without doc- umentation, such discussions may be less likely to guide care.","Clinicians must recognize desire for family centered decision making and provide patients the opportunity to make decisions together w/ their families when preferred.\nPolicies to faciliate family decision making - routine family meetings, private spaces for family discussions, involving a social worker or non physical member of the medical team w/ specialized communication and consensus building skills.","Policy makers, health care staff","NA","NA","Cross-sectional interviews w/ 147 older Latinos.","Not significant, only considered as a variable","Emphasis on family centered decisdion making and limited patient autonomy. These preferences are notably at odds with guiding principles of EOL care in the United States, namely, protection of patient autonomy and legal recognition of a single surrogate decision-maker. A prefer- ence for less autonomy was associated with lower rates of advance directive completion in this sample. This discord may place older Latinos at risk of receiving undesired ag- gressive and burdensome EOL care.","The majority of older Latinos studied preferred less-aggressive, comfort-focused EOL care, yet few had documented or communicated this preference. This discrepancy places older Latinos at risk of receiving high- intensity care inconsistent with their preferences."]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Ko et al",2010,"Role of Children in End-of-Life\nTreatment Planning Among Korean\nAmerican Older Adults","Journal of Social Work in End-Of-Life & Palliative Care","Three focus groups (n1⁄423) with Korean American older adults explored the role of culture in end-of-life decision making. Understanding the role of children in end-of- life decision making among Korean American older adults is important for culturally competent care.","USA","Koreans","Korean American Older Adults","Primary research","Lack of knowledge or misun- derstanding \nDiscussing EoL topics causes discomfort\nChildren's refusal to engage in EoL communication\nUsually oldest son = designate, and sharing of decision making amongst children could lead to conflict","Understand the role of children in decision making and adhering to parents' tx preferences at EoL\n under- stand the influence of physicians when facilitating communication among physicians, Korean American older adult patients, and their children, in order to encourage the constructive use of the physician’s status while safeguard- ing against the potential for undue influence by the physician.\nBe sensitive to the preference of entrusting the eld- est son with decision-making authority and to the practice of collective decision making that may be endorsed by Korean Americans.","Social workers","NA","NA","A qualitative study using focus groups was conducted. The three focus groups (N 1⁄4 9, 8, 6) were conducted in the Korean language at the two par- ticipating senior centers and each was approximately 2-hours long. Individ- ual interviews with a structured questionnaire were conducted prior to the focus groups.\n","We found that more than one half of our participants were Protestant and more than one half of the participants reported being deeply=fairly religious. Confucianism is adhered to as a philosophy that has been ingrained in tradition and cultural values, parti- cularly in relation to parent-child relationships and attitudes toward death. A limitation of this study is that we did not ascertain how, or the extent to which, Confucianism influences attitudes and behaviors on this topic.","Cultural influences determine whether children will follow parents' wishes.  Children raised in Korea were considered to make more efforts to extend parent's life vs. those raised in USA.\nCollectivist decision making in Korean culture. Filial piety was discussed as an important cultural factor influencing the decision-making process among parents and children, which is consistent with previous findings","Study participants experienced negative responses from their children when they attempted to discuss their end-of-life treatment preferences.Participants attributed their children’s refusal to engage in com- munication about end of life with them to their wanting to protect their par- ents from negative and unpleasant thoughts about illness and death, which is one of the obligations of filial piety. Collective decision making is valued in Korean culture (Kwak & Salmon, 2007). Some participants preferred family-based decision making, parti- cularly by children, as was found in previous studies of Korean American older adults (Blackhall et al., 1999; Kwak & Salmon, 2007). They felt that their children would make better decisions on their behalf than they themselves might make. Our finding that none of the study participants had completed an advance directive is consistent with a previous study"]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Ko et al",2013,"Do Older Korean Immigrants Engage in End-of-Life Communication?","Educational Gerontology","This study explored EOL communication among older Korean immigrants. The findings on lack of EOL communication, in particular with health care professionals, point to the importance of community-based education on EOL care planning. Health care professionals’ active dialogue with older adults and family members and provision of culturally adequate EOL care is imperative.","NYC, USA","Koreans","Older Korean immigrants","Primary Research","Health care professionals, including physicians, are not comfortable initiating these conversations for fear of upsetting and discouraging their patients. Cultural taboos about discussing terminal illness or death among certain groups might heighten these feelings of discomfort.\nHaving general EOL communication as opposed to specific discussions might be related to the parti- cipants’ lack of knowledge about the types and functions of life-sustaining treatments.","Health care professionals’ active dialogue with older adults and family members and provision of culturally adequate EOL care is imperative.\nUnderstand decision making involves inclusion of family members. It is important for health care professionals to assess an individual’s willingness to discuss EOL care options without making assumptions that discussing such topics are a taboo in certain cultures\nEducation and information re: EOL care\nHealth care professionals’ engagement in dialogue with both elders and their family members regarding EOL care remains an important consideration","Healthcare professionals","NA","NA","Cross-sectional design.195 older Korean immigrants who were members of Korean senior centers in New York City were interviewed face-to-face using structured questionnaires. A convenience sampling method was used to select participants from the two Korean senior centers located in Korea Town. Members who expressed an interest in participating in the study were asked to provide their names and contact numbers on a sign-up sheet to schedule the interviews. The inclusion criteria for participating in the study were age 65 and older, a member of the selected senior centers, self-identified Korean immigrants, and cognitively intact","Other social, cultural, and religious/spiritual contexts also need to be considered in under- standing advance care planning. Some studies (Kelley et al., 2010; Matsui et al., 2008) have found a significant association between acculturation and advance care planning such that part- icipants with greater acculturation were more likely to engage in advance care planning. In this study, participants with greater private religious practices were less likely to engage in EOL communication. ","EOL communication is influenced by multiple components including personal, situational, social, and cultural factors. Korean American older adults believe that it is best to avoid talking about serious illness and death before they occur. In this study, those who did not engage in EOL communication held significantly more traditional perspectives toward discussing EOL care than their counterparts.","Overall, 21.9% of participants reported to have discussed their end-of-life treat- ment preferences with others, primarily family members. Attitudes toward end-of-life discussions, perceived burden, religiosity, and the number of children in the U.S. significantly accounted for end-of-life communication. Culturally appropriate interventions are recommended to promote dialogue regarding treatment preferences among older adults, family, and health care professionals.","EOL discussions occurred mostly with family members as opposed to health care professionals"]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Kongsuwan et al",2012,"Thai Buddhist families’ perspective\nof a peaceful death in ICUs","Nursing in Critical Care","To describe the concept of a peaceful death in Ics from the persepctive of Thai Buddhist family members","Thailand","Thai people","Family members whose loved ones died in adult ICUs","Primary research","Misunderstanding that death is not simply an individual concern but also invovles families and belief systems.","Mutual care btw nurses and dying patients' family is necessary to promote a peaceful death in ICU.\nUnderstand dying patient's family = a group that has privelege in managing the death of a loved one to help them achieve a peaceful death. \nEncouragement by nurses and care providers","Healthcare providers, nurses","NA","NA","This descriptive qualitative study was based on data generated from individual in-depth interviews of nine Thai Buddhist family members from the southern region of Thailand whose loved ones died in adult ICUs. Colaizzi’s phenomenological approach was used to analyse the data. Rigour for the study was established by Lincoln and Guga’s guidelines for qualitative research studies.","‘Not suffering’ is a common concept that describes a peaceful death for Buddhists. Based on their Buddhist belief, the participants stated that a peaceful death would happen if the mind was peaceful and happy","In this study, the core quality ‘family members were not mourning’ suggests that crying loudly and shedding tears on the body of dying persons were not appropriate in Thai Buddhist culture. Thai Buddhists believe that if this happened the dying person would not die peacefully and the spirit would not go to the heaven or a good place. This is markedly different from the Chinese culture. Chinese people believe that crying loudly by children and relatives are acceptable on the death of their loved one. It is believed that hell and heaven will hear their crying and know that the dying person is a good person, so that when he/she died, the persons left behind feel sorrow","Five core qualities emerged that made-up the concept of a peaceful death as described by Thai Buddhist family members who cared for their loved ones while they were dying in ICUs. These core qualities were ‘knowing death was impending, preparing for a peaceful state of mind, not suffering, being with family members and not alone, and family members were not mourning’.\nConclusion: Thai Buddhist family members described what they meant by a peaceful death. ‘This was: preparing for a peaceful state of mind in knowing that one’s impending death is not a situation of suffering or being alone, but rather a time of being with family members who are not yet mourning one’s death.’ The findings support that family members should participate in promoting a peaceful death for their loved ones dying in ICUs."]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Kwak et al",2005,"\nCurrent Research Findings on End-of-Life Decision Making Among Racially or Ethnically Diverse Groups","The Gerontological Society of America","We reviewed the research literature on racial or ethnic diversity and end-of-life decision making in order to identify key findings and provide recommendations for future research.","USA","Non-white racial or ethnic groups","Patients","Review","Hicks and Lam have argued that assumptions of an autonomous and primary decision maker of most decision-making theories reflect biases of Western culture and ignore the influence of family members and the larger social networks and may not be appropriate for non-Western cultures"," Policy makers need to find ways to allow flexibility to support values and norms of various racial or ethnic groups in order to respect and protect rights of patients and their families.","Policy makers, health care staff","NA","NA","Narrative review by identifying 33 empirical studies re: race and ethnicity and EoL decision making","NA","Korean and Mexican American older adults were more likely to believe that family, specifically adult children, should make decisions regarding end-of-life treat- ments in the event that they become incompetent or terminally ill compared with White or African American groups. These researchers reported that Korean American older adults believed that end-of- life decision making is the family’s responsibility and that filial piety and family-centered decision-making patterns of traditional Korean culture were un- derlying factors for such involvement of family.","In sum, research to date suggests that race, eth- nicity, and culture have powerful effects on end-of-life decision making. Although the complexity of this area precludes simple conclusions, research on diversity and the end of life has the potential not only to ad- vance theoretical understandings of culture and aging but also to improve care for older adults at a time in their lives where they may be especially vulnerable."]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Kwak et al",2007,"Attitudes and Preferences of Korean-American Older Adults and Caregivers on End-of-Life Care","ETHNOGERIATRICS & SPECIAL POPULATIONS","This focus-group pilot study examined social and cultural factors influencing views of Korean-American older adults and caregivers on advance care planning and hospice care.","USA","Koreans","Korean patients","Primary research","Lack of knowledge about end-of-life- The majority of older adults and caregivers have little knowledge of or misconceptions about advance directives and care hospital.\nInitiating end-of-life discussion is difficult for older adults and caregivers.\nOlder adults prefer indirect communication through noon chi.\nLanguage barriers","Physicians facilitate end-of-life Physicians can play a valuable role in assisting older adults and caregivers in end-of-life care planning by initiating end- communication of-life conversations. Developing educational tools and providing learning opportunities to the Korean-American community will be an important step in increasing awareness of the value and utility of advance care planning and end-of-life care choices. End-of-life educational materials should discuss different care planning and treatment options in a culturally sensitive manner. ","Healcare providers, health care staff ","NA","NA","This was a nonexperimental, qualitative pilot study using focus groups. Focus group interviewing involves four to 12 people in a nonthreatening environment and is known to be appropriate methodology for research with older adults and persons with disabilities.","NA","Home death is a valued cultural norm but also has potential to impose burden on family.\nFilial piety supports and rejects use of hospice.\nThe cultural expectation is for family to make the final end-of-life care decision.\nA benefit of advance directives is that they guide children in making the final decision for older adults.","This study found diverse attitudes among Korean Americans toward end-of-life care and cultural and struc- tural barriers to advance care planning and hospice use. Older adults and caregivers both expressed a lack of knowl- edge about advance care planning and hospice and agreed that the family would make the final decision about the end- of-life care, while acknowledging the challenge of initiating communications about treatment preferences. They inter- preted the Korean value of filial piety to support both cu- rative and palliative treatment. The traditional norm of home death and importance of physician communication influenced preferences for hospice and advance care plan- ning, respectively. Future outreach and education efforts should include development of culturally sensitive educa- tional and communication tools and collaboration with ethnic community organizations and healthcare providers in the dissemination and education of these instruments."]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Laguna et al",2012,"Racial/Ethnic Minority Access to End-of- Life Care: A Conceptual Framework","Home Health Care Services Quarterly","The purpose of this article is to propose a conceptual framework that offers a more complete understanding of the factors contributing to minority EOL care disparities. Drawing from previous health care access models and minority EOL access barriers identified in previous studies, this article pro- poses a series of patient-level, system-level, and societal-level barriers that, along with provider-level mediators, influence aggressiveness of care and ultimately patient outcomes at EOL.","USA","NA","Providers","Theoretical","challenges communicating comfort care preferences to providers poten- tially resulting in care that is not consistent with the patient’s wishes. Fundamental differences in truth-telling and decision-making may present added challenges to minority advance care planning. While the U.S. health care system emphasizes patient autonomy, other cultures value more collective approaches, often looking to the family to make care decisions while concealing serious diagnoses from patients out of respect. Personal barriers include acceptability of care, cul- ture, and challenges concerning language, attitudes, education, and income. IOM posits that personal barriers function to impede access to medical ser- vice use and influence patient adherence to treatment recommendations. Structural barriers are obstacles to medical care associated with number, type, location, and other organizational factors of health care providers.","Sensitivity to biases, learn to empower patients and their families and dev't trusting and therapeutic relationships.\nCultural competence, communication skills, medical knowledge, technical skills, appropriateness of care, patient adherence","Clinicians and researchers","NA","NA","Synthesis of previous research to dev't a framework","Patient religious beliefs have a strong influence on EOL decision- making, with religious individuals preferring more aggressive interventions at EOL.Among minorities, high religiosity has been associated with a preference against advance care plan- ning and decisions not to enroll in hospice ..Religious beliefs have also been shown to affect health care decision-making among non-terminal African American men","Physicians’ medical decision-making is influenced by their race, ethnicity, and cultural identification. Compared to White physicians, African American physicians are less likely to support advance directives in their patients, less like to support early discussions of patient EOL preferences, and more likely to want aggressive care for themselves given a vegetative state. hysician culture also influences the type of care provided, with research finding European-trained physicians more paternalistic (e.g., supporting less patient autonomy) than North American-trained physicians","Improved understanding of the numerous potential barriers and mediators to EOL care for minorities may increase health and social service provider awareness, foster the develop- ment of new interventions to overcome barriers to EOL care, and result in more robust interventions that target multiple barriers. Improving clinician awareness on how personal characteristics, values, and practices can poten- tially influence care decisions for their seriously ill patients is an important step in addressing the EOL needs and care decisions of minority patients."]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Liao et al",2008,"Interdisciplinary End-of-Life Care in Nursing Homes","Clinical Gerontologist The Jounral of Aging and Mental Health","Review to understand how to Improve EOL care in nursing homes","USA","NA","Care providers, healthcare professionals","Analysis "," Current end-of-life (EOL) care in these facilities faces substantial challenges, including under- management of pain, dyspnea, and other symptoms, a clash of cultures between palliative care/hospice teams and the nursing facility, and reim- bursement policy that discourages the use of hospice. For ethnic minorities, these challenges are more striking.Other barriers to good EOL care include cultural conflict between the facility and the hospice team, conflict between patients/ families and staff, and regulatory and reimbursement factors.","Education, better utilization of hospice, cooperation in quality improvement, and changes in reimbursement policy will lead to better care for these increas- ingly frail and elderly patients.\nand one third excruciating pain (Buchanan, Choi, Wang, & Huang, 2002). Factors predicting utilization of formal hospice care in nursing homes included having some form of an advance directive, the presence of significant pain, and white race\n","Policy makers","NA","NA","Review of literature","NA","Before attempting to improve EOL care in nursing homes, one must understand the cultural differences between the nursing home staff and the hospice/palliative care team. These differences sit at the root of the problem and are major barriers to full integration of true interdisciplinary EOL care. Many of the professional and nonlicensed staff at nursing homes are from minority backgrounds, while hospice staff are often pre- dominately white. More important than these ethnic generalizations is the professional culture staff members bring from their different backgrounds and training. ","Good palliative care requires integration of the traditional nursing emphasis on recovery and stabilization with the palliative emphasis on acceptance of decline and control of symptoms. Finally, for improvements in EOL care to become established, they must be grounded in changes of policy and reimbursement. Such changes need to allow palliative care during trials of restorative therapy and view palliative care as a skilled need. Regulatory changes must occur to reward nursing homes for providing appropriate EOL care. "]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Loike et al",2010,"The Critical Role of Religion: Caring for the Dying Patient from an Orthodox Jewish Perspective","JOURNAL OF PALLIATIVE MEDICINE","In this article we explain several underlying Orthodox re- ligious beliefs and principles that impact end-of-life decisions. We believe the consensus guidelines we present are applica- ble to any hospital in the world that serves an Orthodox Jewish population. The guidelines underscore both the need for clergy of all faiths to exchange views and ideas with physicians and other health care professionals and for other hospitals to develop their own unique guidelines for the care of the dying patient from varied cultures..","USA","Jewish patients","Providers","Analysis","Patients nearing the end of life often lose interest in eating or have difficulty swallowing, which can lead to choking and aspiration. In such cases, it is sufficient to make patients comfortable by using menthol swabs or ice chips.  Misunderstandings of medical condition and tx","Enhancing the capacity of health care professionals to better respect, guide, help, and comfort the religious patient and the family at life’s end is a critical component of providing comprehensive patient care. Respecting the religious and cultural values of the patient, in addition, is not only a Jewish concern but is a generic concern at a hospital where there are patients of diverse traditions.  Role of the Rabbi . Especially difficult topics that should be addressed relate to the value of life versus the quality and quantity of life, autonomy versus paternalism, and how to manage pain and nutrition for the dying patient. Conse- quently, it is advisable for Orthodox patients and their fami- lies to be asked if they would wish to consult with a rabbi of their choice as early as possible in the care of the critically ill patient.","Healthcare professionals","NA","NA","The guidelines for the care of the dying Orthodox Jewish patient were mutually agreed upon by the authors, recognized authorities in medicine, ethics, and Jewish law, who presented their perspectives during a 1-day symposium and who participated in an active working-group session.","Religious perspectives on advance direc- tives, comfort care and pain control, nutrition and hydration, do not resuscitate/do not intubate (DNR/DNI), and extubation are often unfamiliar to the American medical community.\nOne major philosophical/ethical difference between secu- lar and Halakhic practice is that U.S. law promotes and even relies on autonomy of the patient and family in making medical decisions regarding the dying patient","Enhancing the capacity of health care professionals to bet- ter respect, guide, help, and comfort the religious patient and the family at life’s end is a critical component of providing comprehensive patient care. Respecting the religious and cultural values of the patient, in addition, is not only a Jewish concern but is a generic concern at a hospital where there are patients of diverse traditions.","Care of the religious patient close to death is enormously complex especially when balancing religious obligations, the role of the rabbi, medical procedures, and personal preferences. These guidelines address from a religious perspective profound issues such as the definition of death, organ donation, and caring for the patient at life’s end. The guidelines can be useful for any hospital that serves an Orthodox Jewish population."]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Morita et al",2004,"Existential concerns of terminally ill cancer patients receiving specialized palliative care in Japan","Support Care Cancer","The aim of this study was to categorize existential concerns of Japanese terminally ill cancer pa- tients and explore care strategies. ","Japan","Japanese","Patients","Primary research","Communication, inability to verbally articulate needs, isolation concernss, concersn about family preparation, feeling that they are a burden, patient-family relationship concerns, loss of physical control","Support patients to receive available treatments and second opinion; support patient coping style; religious counseling,Help patients and family to share feelings and time, Facilitate family grief, support patients to complete life tasks for family,Maintain function by rehabilitation and orthotics; facilitate self-care and enhance cognitive control Minimize sedative medications; treat cognitive impairment; facilitate “letting-go”\nEducate on predicted course; focus on emotional control, not what happens in future; facilitate “letting-go”\nHelp patients and family share feelings and discuss reality; support patient value\nPreserve achievable role/activity; explore a new role/activity; facilitate review of past accomplishments\nHelp patients to complete life tasks\nEstablish achievable goal; explore expectations after death\nSupport patients to receive available treatments and second opinion; support patient coping style; religious counseling","Caregivers, Healthcare providers, policy makers","NA","NA","A multicenter cross-sectional study in 88 terminally ill cancer patients receiving specialized inpa- tient palliative care was performed. The nurses explored patient existen- tial concerns by asking several key questions, and recorded the answers that they considered typically de- scribed the patients’ concerns. All statements recorded by the nurses were analyzed using content analysis methods.","Not considered as the authors state \"many Japense have no specific religion\"","Not specifically considered - looked beyond cultural differences to shared universal experiences","Existential concerns of Japanese termi- nally ill cancer patients were categorized as relationship- related concerns, loss of control, burden on others, loss of continuity, uncompleted life task, hope/hopelessness, and acceptance/preparation. This classification can contribute to the development of effective therapeutic interventions to alleviate existential distress. These themes seemed to encompass universal human suffering beyond cultural differences, and this concep- tualization may contribute to the development of effective therapeutic interventions to alleviate existential distress."]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Narayanasamy",2007,"Palliative care and spirituality","Indian Journal of Palliative Care","In this article, the author draws from his empirical work on spirituality and culture to develop a discourse on palliative care and spirituality in both secular and non-secular settings. In doing so, this paper offers some understanding into the concept of spirituality, spiritual needs and spiritual care interventions in palliative care in terms of empirical evidence.","NA","South Asians","Patients","Review","Poor self concept or self esteem, self image, hopelessness, despair, sense of loss, anxiety, sadness, anger, fear/anxiety","Trust, expression of beliefs and values, hope, patient's social support system, sensitivity to person's cultural values, physical preferences and social needs, good listening and communication, non judgemental approach","Healthcare practioners","NA","NA","Literature review","Spiritual support may act as an adjunct to the palliative care of those facing advanced diseases and end of life. Chronic illnesses and advanced diseases may leave the persons in a state of imbalance or disharmony of body, mind and spirit. W/ regard to spirituality and healing, there is a consensus in literature about the influence of spirituality on recovery and the ability to cope with and adjust to the varying and demanding states of health and illness.  Research into coping strategies suggests that many subjects in the study facing advanced diseases and end of life indicated that they gained strength from their spiritual life.[20] For some, the source of strength included a renewed faith in God, prayer, a sense of peace resulting from prayer and feeling God’s love. Other strategies highlighted were meditation, receiving love and support from others, participating in church activities and a life review.","Caring for an individual requires action, support and assistance…means a non-judgemental approach and showing sensitivity to person's cultural values. It is worth noting that Buddhism, an offshoot of Hinduism, has influenced the spiritual culture of Sri Lanka, Tibet, China, Japan, Korea, Thailand and many other countries of Asia.  Critical junctures such as chronic illnesses and other crises compel some individuals to turn to organised religion and seek comfort in its tenets and traditions. ","The evidence suggests that spiritual issues need to be considered and patients are supported to attain a better quality of life whilst facing chronic illness or end of life. It is hoped that healthcare practioners are guided toward maximising their role in spiritual support for their patients. Spiritual support for patients can be challenging, but at the same time it can be a rewarding experience for practitioners.","Terminal illnesses challenge all aspects of the person. Those requiring palliative care may have physical, psychosocial and spiritual needs. Although the suggested strategies are derived from Judeo- Christian perspectives to some extent, much of the discourse in this paper could be adapted to secular and non-secular contexts in South East Asia since the lived experience of chronic and end-of-life illnesses impact upon the sufferers’ body, mind and spirit. A holistic approach to palliative care may help the sufferer to experience a harmonious balance between the body, mind and spirit. "]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Nath et al",2008,"A Place Called LIFE: Exploring the Advance Care Planning\nof African-American PACE Enrollees","Social Work in Health Care","The goals of this exploratory study were (a) to describe, among African-American PACE (Program of All-Inclusive Care for the Elderly) enrollees, verbalized preferences for end-of-life care as compared to preferences for care as documented in their medical record and (b) to explore the personal values that inform end-of-life decision making among these frail elders. ","USA","African Americans","Patients","Primary research","Worry of burdening caregivers, loss of control of personal health care, inability to maintain usual activities of daiy living, cultural misturst of the health care system and religious beliefs that conflict w/ the concept of planning for death","Religious beliefs","Social workers","NA","NA","Medical record review and semi-structured interviews generated descriptive and qualitative data for 18 African-American enrollees in a PACE program located in a large eastern city of the United States.","African-American elders relied on faith in God as central to medical decision making, believing ultimately that God controls the end of life.Participants frequently identified belief in God as a guiding and comforting force. In addition, participants avidly practiced their faiths and felt supported by pastors, church members, and their communities. Participants spoke of praying daily, reading and interpreting the Bible, and attending church on a regular basis.","African Americans are less likely to engage in advance care planning because of cultural mistrust of the health care system and religious beliefs that conflict with the concept of planning for death. African Americans were less satisfied with their care at the end of life and reported greater communication diffi- culties with physicians than their White counterparts.","Preferences for EoL care indicated most preferred life-sustaining tx, PACE enrollees had limited information or understanding of the interventions and terminology w/ advance directives, EoL decision making was influencd by desire to maintain usual activities of daily living; to avoid burdening caregivers, and to remain in control of personal health care.  "," Verbalized preferences and documented advance directives, however, were not always in agreement. Although every participant had an advance directive in the medical record, several still reported they had not documented their preferences for care or were unsure if these documents existed. Similarly, participants seemed unfa- miliar with the purpose and terminology associated with advance directives."]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Peng et al",2012,"Cultural Practices and End-of-Life Decision Making in the Neonatal Intensive Care Unit in Taiwan","Journal of Transcultural Nursing","The purpose of this research was to describe conditions of decision making for dying infants and cultural effects on the process of infant death in the neonatal intensive care unit. ","Taiwan","Taiwanese people","Patients and carers","Secondary analysis","Lack of open and culturally sensitive discussion btw healthcare providers and families may inhibit decision making process and prevent implementation of neonatal palliative care","Open communication btw health care team and parents, culturally sensitive discussion, clinicians should respect culture and learn culturally competent strategies to comfort grieving families during difficult time, clinicians and healthcare providers hsould be trained and participate in offering appropriate philiosophy, culture, structure and environment during care of patients","Nurses, Palliative end EoL healthcare providers, clinicians","NA","NA","A retro- spective method was used to review charts of 50 neonates who died in the NICU. The study took place in the NICU of a medical center that admitted patients from local,regional, and multiregional populations in Taiwan. All charts of neonatal inpatients who died in the NICU between 2002 and 2008 and who met entry criteria were included. Entry criteria were defined as having terminal conditions and showing no response to medical treatment for at least 8 hours prior to death. ","Various cultural issues affected the dying process of infants in this research. Researchers have found great outward expres- sion of religion at the time of death; in this research, Buddhism was the predominant religion. According to a survey, Buddhist belief uses death as an opportunity for improvement in the next life. The religion of the families was often expressed in their approach to the death of their infants. In six cases, families played Buddhist music (reciting sutra) to their dying infants. In one case, family and physician prayed together for the dying infant. In five nursing notes, families hung a Buddhist good luck charm inside the incubator with the dying infants.","Research also found that the father was the key person to sign the DNR consent form. This result might be because of the cultural norm that the father is usually the key decision maker in Asian families. Moreover, it was documented that family members made the decision together in 19 cases. According to these documents, family members included grandparents and the siblings of the parents, indicative of the importance of the extended family in Asian culture. Culture shapes choices for life support, includ- ing the preferred place of death (whether home or hospital), patient autonomy and decision making, the family duty to care for the sick and dying, the use of alternative medicine, and death rituals, funeral, and burial practices (Kanth, 2006). Understanding culture and its role in care is important for professionals providing end-of-life care since cultural per- spectives influence attitudes toward sickness, dying, death, and grief.","Open communication between the health care team and the parents is an essential element in assisting grieving families. This research found that the majority of records reflected the important role of religion and culture in families’ care for their dying infants.  On the other hand, lack of open and culturally sensitive discussion between professional health care providers and families may inhibit the decision-making process and prevent the implementation of neonatal palliative care. Neonatal clinicians should respect culture and learn culturally competent strategies to comfort grieving fami- lies during this difficult time of losing a loved one. Based on these research findings, a professional neonatal nurse should be trained and participate in offering an appropriate philosophy, culture, structure, and environment for the provision of competent and compassionate palliative care to dying infants and grieving families ","Buddhism is the main religion in Chinese culture and in Taiwan. Buddhist belief views death as an opportunity for improvement of status in the next life. Therefore, in the Chinese Buddhist view, caring for the dying person focuses on the patient’s state of mind at the moment of her or his death. When death is imminent, reciting sutra in the presence of the dying person will instruct him to go freely in peace, family participation in decision making is important"]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Perkins et al",2009,"Cultural Beliefs About a Patient’s Right Time to Die: An Exploratory Study","Journal of General Internal Medicine","To understand patients from different ethnic groups' beliefs about the right time to die.","Texas, USA","Mexican Americans, Euro-Americans and African Americans","Patients","Primary research","Doctors may feel ill-prepared to counsel patients / families about the right time to die.\nMiscommuncation or misunderstanding\nReluctance or hesitation to disucss beliefs about EoL an dying w/ doctors, not knowing how to approach the topic, unrealistic beliefs","Drs can review patients condition, explain importance of patient and family beliefs in planning future care, faciliation of responses, cultural sensitivity, communicate general, try to match care to patient or family beliefs, recognize unrealistic beliefs and warm against them","General healthcare practiioners, doctors","NA","NA","Interviews and content analysis of results","Majorities of all ethnic groups and gender subgroups said God helps determine—perhaps decisively—a patient’s time to die.","American ethnic cultures have some distinct beliefs about the right time to die. (African Americans, for example, typically want life support far longer than do Euro-Americans. Wwithin each ethnic group the genders differed consis- tently over two other themes. Some women, but no men, said a patient’s time to die is preset. \nMajorities of MAs and AAs, but only a minority of EAs, mentioned patient suffering as such a signal (theme 4C). These subjects split nearly evenly between blaming the suffering of particular patients on the disease or on the treatment. AA religious beliefs—that God ultimately controls death, doctors are instruments of God’s purpose, physical suffering tests one’s faith, and faith can both heal and comfort.","Nearly all subjects regardless of ethnic group or gender said God determines (at least partially) a patient’s right time to die, and serious disease signals it. Yet subjects differed by ethnic group over other signals for that time. Patient suffering and dependence on “artificial” life support signaled it for the MAs; patient acceptance of death signaled it for the EAs; and patient suffering and family presence at or before the death signaled it for the AAs. Subjects also differed by gender over other beliefs. In all ethnic groups more men than women said the time of death is unpredictable; but more women than men said the time of death is preset, and family suffering signals it. Furthermore, most MA women—but few others—explicitly declared that family have an important say in determining a patient’s right time to die. No confounding occurred by religion","Americans may share some beliefs about the right time to die but differ by ethnic groupor gender over other beliefs about that time. Quality end-of-life care requires accommodating such differ- ences whenever reasonable."]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Perry et al",2005,"Peer Mentoring: A Culturally Sensitive Approach to End-of-Life Planning for Long-Term Dialysis Patients","American Journal of Kidney Diseases","This study is designed to explore the impact of peer mentoring on end-of-life decision making.","Michigan","Whites, African Americans","Patients","Intervention","Cultural mistrust in healthcare system by African Americans due to historical circumstances (incl. written documents, printed materials), lack of understanding of the EoL and advance directives planning process, disengagement by minority groups","Peer mentoring to address differences in cultural value systems, allay anxiety, promote discussion and acceptance of advance directives planning and death, trust w/ Healthcare personnel w/ whom patients have a relationship","Healthcare, policy makers","Individual - dialysis patients trained to help other patients via peer mentoring","Patients were assigned by ran- dom lots to receive AD information in 1 of 3 ways: (1) through peer mentoring (group 1; peer intervention), (2) through printed material prepared by the National Kidney Foundation (“Advance Directives: A Guide for Patients and Families,” question-and-answer format, targeted at 8th- grade reading level) distributed approximately at the mid- point of the 2- to 4-month study period (group 2; printed material), or (3) through no additional means other than that routinely provided by the dialysis unit (group 3; control). \nPatients respodned to baseline survey then follow up survey","A controlled randomized intervention study with 203 patients from 21 dialysis centers across Michigan explored the impact of peer mentors, dialysis patients trained to help other patients, on end-of-life planning.","African Americans often have a familial, religious, and communal frame of reference that deters autonomous individual responsiveness, and this characteristic is mani- fest particularly in the consideration of ADs. Relationships with family members and peers who have had similar life experiences may be a more effective way to engender trust and connect- edness with African Americans.","Peer support associated w/ improved subjective well being and lower anxiety in African Americans, but not whites.\n\nCultural mistrust of the health care system in the United States among African Americans could be another explanation for our findings. In such experiences as the 40-year Tuskegee Experiment.  African-American men were misled through the use of printed materials to believe they were receiving help, whereas in truth, these men remained untreated for syphilis. Such epi- sodes have fostered profound mistrust among African Americans, mistrust that includes writ-ten medical protocols. Furthermore, African Americans are disproportionately represented in lower-level jobs that provide little or no insur- ance coverage, engendering disparity in availability and access to health care, which am- plifies mistrust.\nOral tradition","These results suggest the importance of addressing specific cultural factors in the process of AD education. Common practice assumes that printed materials are effective in educating patients about health care and decision making. However, peer mentoring, a relationship-centered person-to-person approach, may be more effective in some cultural groups because it partakes of oral, rather than written, traditions. Acknowledging cultural differences and tailoring our approach could be powerful in enhancing trust and participation and decreasing potential disparities in health care outcomes. ","Because peer race was not the critical factor in our study, the relationship itself, and not racial similarity, was the likely stimulus for effective AD education, change in behavior, and psychosocial well- being.\n printed material does not appear to change attitudes or foster completion of ADs without the added input of trusted health care personnel with whom patients have some ongoing relationship."]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Pesult",2010,"Situated clinical encounters in the negotiation of religious and spiritual plurality: A critical ethnography","International Journal of Nursing Studies","The purpose of the study was to analyze the negotiation of religious and spiritual plurality in clinical encounters, and the social, gendered, cultural, historical, economic and political contexts that shape that negotiation.","Canada","Diverse","Healthcare professionals, spiritual care providers, patients ,families, administators","Primary research","Integrating spirituality and religion into clinical care can be ethically challenging, patient resistance","Training, education, self reflection, negotiating resistance, creating safe spaces, understanding and connection","Healthcare providers","NA","NA","Critical ethnogaphy w/ in depth interviews and participant observations","Religious and spiritual identities of healthcare providers are highly influential in clinical encounters.These identities are complex and shaped by a variety of religious, cultural and disciplinary influences.\nincreasing religious and spiritual diversity in globalized societies, and the impor- tance of spirituality and religion to patients during times of illness, indicates a need to rethink potential tensions that arise as a result of diverse values and beliefs.Metaphors were used by some participants to com- municate what they perceived to be their identity in relation to religion or spirituality in the care-giving process. Some had religious connotations such as being a ‘messenger’, ‘minister’, or ‘wounded healer’. Others selected less identifiable metaphors such as being a ‘co- journeyer,’ or a ‘carpenter with a tool belt who selected the appropriate spiritual tools’. The metaphors provided insights into how identities were constructed and taken up into the negotiation of care."," physician spoke of his Greek Orthodox heritage which he critiqued as being a ‘‘cultural religion’’ that marked him as foreign as a child. He believed that religion had no role in his care providing, though he described his approach to care as ‘pastoral’. When asked the demographic question of religious affiliation, he replied ‘Greek Orthodox’ (Health care professional 2), an example of this type of paradox in locating oneself along religious or spiritual lines, and the blurring between religious and ethnic identities","Clinical encounters between care providers and recipients were shaped by how individual identities in relation to religion and spirituality were constructed. Importantly, these identities did not occur in isolation from other lines of social classification such as gender, race, and class. Negotiating difference was a process of seeing spirituality as a point of connection, eliciting the meaning systems of patients and creating safe spaces for the expression of that meaning.","The complexity of religious and spiritual identity construction and negotiation raises important questions about language and about professional compe- tence and boundaries in clinical encounters where religion and spirituality are relevant concerns.Successful negotiation across spiritual and religious difference arises from a commitment to personal development while holding to a clear understanding of professional boundaries and obligations.\nAll clinical encounters are situated—uniquely by the personal meanings brought to the encounter, and socially by merit of the religious, spiritual, cultural, and disciplinary identities held."]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Phua et al",2011,"End-of-Life Care in the General Wards of a Singaporean Hospital: An Asian Perspective","JOURNAL OF PALLIATIVE MEDICINE","To understand EoL care in general wards of a Singaporean hospital, evaluated the prevalence of do- not-resuscitate (DNR) orders and orders for or against life-sustaining therapies; second, if such orders were discussed with the patients and/or family members; and third, the actual treatments provided before death.","Singapore","Chinese, Malays, and Indians","Carers","Secondary Research","This study reveals a huge gap between the patient-centric model of end-of-life decision making pro- moted by the West, and the family-centric model held by several Asian cultures.\nLack of commitment for life sustaining therapies","Cultural sensitivity by healthcare professional, communication and information sharing btw healthcare professional, patient and family, understand family centric models in Asian cultures in decision making","Healthcare professionals","NA","NA","We performed a retrospective medical chart review of all 683 adult patients who died without intensive care unit (ICU) admission in our Singaporean hospital in 2007. We first evaluated the prevalence of do- not-resuscitate (DNR) orders and orders for or against life-sustaining therapies; second, if such orders were discussed with the patients and/or family members; and third, the actual treatments provided before death.Two investigators (J.P., N.W.A.) supervised 12 research nurses who collected the following data via medical record review.","Not addressed","This study reveals a huge gap between the patient-centric model of end-of-life decision making pro- moted by the West, and the family-centric model held by several Asian cultures. This gap may be narrowed via the use of advance directives before the terminal hospitalisation. \nargued that a family-centric model may be more appropriate\nfor Asian cultures. Surveys suggest that noncritically ill\nAsians preferred to leave end-of-life decisions to their loved\nones,and that Chinese doctors struggled in disclosing\npoor prognoses to terminally ill patients.","This study found a lack of commitment by doctors on or- ders for DNR/CPR and to limit life-sustaining therapies, in- frequent discussions with patients on end-of-life decisions, and excessive burdensome interventions with inadequate palliative care for the dying. These findings may reflect certain Asian cultural biases. More work is required to improve our quality of end-of-life care.\n"]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Rao et al",2008,"Elderly Indo-Caribbean Hindus and End-of-Life Care: A Community-Based Exploratory Study","The American Geriatrics Society","This study describes the de- mographic and health characteristics of older Indo-Caribbean Hindu people (a subset of the Hindu population living in America) populations and examines their attitudes, knowledge, and beliefs regarding some EOLC issues. ","New York City, USA","older Indo-Caribbean Hindu people (a subset of the Hindu population living in America)","Patients","Primary research","Confusion of advanced care directives and EoL care w/ general wills.  Lack of understanding and knowledge.","Positive attitudes about healthcare system and healthcare professionals, understanding that family is central to decision making","Healthcare professionals","NA","NA","Interviews","This population’s preferences for non- aggressive care at the end of life and family decision-making are consistent with traditional Hindu beliefs, but it is un- clear what Hindus in the United States believe as a whole, because widespread studies have not been conducted. Fur- thermore, the Hindu diaspora in the United States is vast, reflecting multiple generations, waves of immigration, and levels of acculturation. participants on the whole considered themselves to be religious and felt strongly about the importance of follow- ing traditional Hindu rituals at the time of death","Participants identified w/ Indian culture. The Indo-Caribbean population is mostly Hindu and shares cultural traditions and values with most Asian Indians.","Subjects were socially connected, moder- ately acculturated, and religious. Scores on the Ethnicity and Attitudes Towards EOLC Survey indicated negative beliefs about life-sustaining or prolonging technology and positive attitudes about advance care directives (ACDs), truth-telling, and family involvement. The number of ACDs that had been completed and knowledge about ACDs was low. The Indo-Caribbean elder population in this study ex- pressed attitudes and beliefs regarding EOLC similar to those of other ethnic elders. Many of these beliefs are in conflict with current EOLC practice patterns. This high- lights the importance of being aware of differing attitudes to provide sensitive EOLC."]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Reese et al",2004,"Programmatic barriers to providing culturally competent end-of-life care","American Journal of Hospice and Palliative\nMedicine","Understand barriers to providing culturally competitent EoL care.","USA","NA","Decision makers - directors, providers","Primary research","Lack of diversity amongst hospice/healthcare professionals may present a barrier to access and utilization of services, language barriers, lack of understanding of cultural differences, fear and mistrust by clients of Euro American healthcare system, lack of knowledge of other cultures may lead to policies and practises and communication sytles that screen out diverse groups or cause offenses.Barriers to culturally competent care presented by the provider organization may include physical location, degree of formality, amount of paperwork, lack of continuity of care, and bureaucracy. Ineffectual outreach to the community may also create barriers. A scarcity of culturally diverse healthcare pro- fessionals exacerbates the disparity of cultural backgrounds between staff and clients. Lack of clinician referral sources for minorities may also pre- sent a barrier, resulting from lack of access to primary care and possiblyfrom insufficient education of minori- ty physicians about hospice care. A national survey found, however, that minority physicians have had difficul- ty getting services for their patients when attempting to make referrals for general healthcare."," guidelines on devel- opment of a task force, outreach activ- ities, and staff diversity training, cultural comptence training, increasing linguistic competence, community outreach","Policy makers, healthcare staff","NA","NA","Interviews","Several directors described a lack of comfort on the part of their staff with diverse clients, including fears regarding differing religions, care for AIDS patients, and therefore care for gay patients. irectors related that differ- ences in cultural and religious beliefs posed barriers, including differing views of death, a preference to care for their own families and use their own methods rather than engaging the healthcare system, and a view of inpa- tient care as a sign of weakness. Difficulty with the English language was again cited as a barrier to access.\nSeveral directors stated a barrier was posed by the staff’s lack of aware- ness of cultural diversity issues, including a lack of knowledge about diverse cultures and religions. They stated that their staff needed informa- tion specifically about the Muslim and Buddhist religions. ","Training needs mentioned included cultural diversity workshops, espe- cially those provided on site. ","Work is also needed within the larger healthcare system in order to address the barriers identified in this study. Efforts must continue to increase the numbers of culturally diverse professionals entering end-of- life care. In addition, work needs to continue to develop more culturally competent Medicare regulations. Hospice and palliative care directors must be made aware of the lack of access to care for diverse clients, as well as the Healthy People 2010 goal of elimination of racial and ethnic dis- parities in healthcare. They must be made aware of the need for cultural competence training, culturally appro- priate materials, diverse staff and vol- unteers, community outreach, and the importance of allocating funds for these efforts. On-site training in cul- tural competence should be provided to their teams. Future research should explore the attitudes and cultural com- petence of directors and staff as well as progress in providing culturally competent care."]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Reese ",2010,"Proposal for a University-Community-Hospice Partnership to Address Organizational Barriers to Cultural Competence","American Journal of Hospice and Palliative\nMedicine","This article describes a participatory action research project which is addressing organizational barriers to cultural competence through a university- community-hospice partnership. The intervention plan is to develop a connection with the African American community, increas- ing community knowledge, and hospice staff cultural competence through a social work student field placement.","USA","African Americans","Students","Intervention","Lack of funding for culturally competent services, Lack of applications from African American applicants, An organizational culture that creates barriers to access, A lack of awareness of which cultural groups are not being served\nSeveral studies have examined barriers to culturally compe- tent care presented by the provider organization itself. Such barriers include lack of diversity of health care staff, physical location, degree of formality, amount of paperwork, lack of continuity of care, and bureaucracy. Ineffectual outreach to the community may also pose barriers, as well as policies such as the requirement for a do-not-resuscitate order.","Cultural knowledge, understanding, acceptance, interpreter services, appropriate recruitment and retention, training, coordinating w/ tradition healers, community health workers, culturally competant health promotion, including family and community members, admin and organizational accomodations.","Policy makers, providers","Societal, educational","(1) literature review, (2) integration with social work edu- cation, (3) collaboration with respondents, (4) collaboration with practitioners, (5) ongoing social action efforts, (6) qualita- tive study, (7) quantitative study, and (8) evaluation of the suc- cess of the project. This project will be integrated with social work education through the use of the field placement, along with independent studies, graduate research assistantships, and class projects, lectures, and discussions. University researchers will form a partnership with hospice practitioners and leaders of the African American community. The project will ulti- mately benefit the population to be served through forging this connection, developing an understanding of existing barriers, collaboratively developing solutions, and ultimately increasing hospice access and utilization by African Americans.","Social work students in field internship to implement an intervention to increase access and utilzation of hospice by African Americans.  Pretests and posttests will document changes made in organizational barriers, including changes in the organization itself and changes in knowledge, attitudes, val- ues, and skills of the staff. 3 conditions, experimental hospice and 2 comparison sites.","Preferences of many African Americans in end-of-life care, for example, may be for their own people to take care of them rather than professionals, to have their own ministers involved, to avoid discussion of death, to pray for a miracle, to die in the hospital, to avoid pain medication, and to access all possible curative care. These perspectives pose a challenge for hospice professionals, because they all may represent a departure from hospice philosophy.","African Americans are less likely to opt for hospice care as per research. Organizational cultural competence in health care describes the ability ofsystems to provide care to patients with diverse values, beliefs, and behaviors, including tailoring delivery to meet patients’ social, cultural, and linguistic needs.","This intervention study is still ongoing.  The first 6 mos of the project was spent recruiting students, researchers and engaging commitment of local hospice and connecting w/ leaderes of local African American community. Remaining months will include public info sessions, cultural competency training sessions for staff and evluate success of project via mixed methods pretest and potest interviews of staff and African American clients.","If this project is successful, it will increase African American access and utilization and patient satisfaction in hospice. In previous times, those who opted out of hospice could continue futile care during their terminal illness; this is becoming less of an option today with health insurance compa- nies aiming toward cost-effectiveness in the care they will pay for. The reality for many African Americans who do not receive hospice care is no care, or nursing home care that may not address end-of-life issues.1,11,15 This study will identify realistic methods for hospices to break the barriers within their own organizations that can pave the way for reducing health care disparities in hospice for African Americans.Recent research has discovered that those African Americans who do receive end-of-life care have reported lower satisfac- tion with the care provided, specifically absent or problematic physician communication, concerns with being informed, and concerns with family support.17"]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Soccomano et al",2014,"at the end of life","The Nurse Practioner","To understand patients' cultural backgrounds to provide competent care at the end of life as nurse practioners","USA","Diverse","Providers","Review","Language barriers, lack of interpreters, mistrust, meaning of certain medications in certain cultures - elicit fears","Providing culturally competent care includes referring patients to culturally appropriate resources, such as qualified medical interpreters, appropriate religious or spiritual personnel, and advanced practice nurses specially trained in evidence- based, cross-cultural practices. Understand role of patient' family","Healthcare practioners, nurses","NA","NA","Literature review","Does the patient want a visit from religious leader? What do patients believe about body after death?  How can HCP honor patient's spiritual beliefs as deaths approaches? Religious beliefs influence decisions at EoL for African Americans - God and faith controls destiny, God is a healer","Cultural competency is part of individualized patient care, which demonstrates respect for a patient’s healthcare beliefs and acknowledges that these beliefs play a role in effective healthcare delivery. Providing culturally competent care includes referring patients to culturally appropriate resources, such as qualified medical interpreters, appropriate religious or spiritual personnel, and advanced practice nurses specially trained in evidence- based, cross-cultural practices. Muslim culture\nWhen working with the Muslim culture at the end of life, the following must be considered: religious preferences, discussion of the diagnosis and prognosis, HCP involvement in care, and family responsibilities. In the Muslim culture, both life and death are under the control of God. ","NPs should become familiar and understand the cul- tural background and influences that can assist them in providing culturally competent care at the end of life. NPs should learn the concepts of various cultures to keep the lines of communication open. NPs should also involve patients in their care and elicit information needed to make the experience comfortable.","Asking questions that target meaning of life invites a freedom for the patient to be open and honest with his or her answers. In their own words, patients articulate expectations of the illness, of the NP, of the family, and of issues speaking to physiological, emotional, and cultural value. This in- tervention might be the first time the patient has had the opportunity to state the value of his or her pain. In that alone, a QOL experience is provided."]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Salman et al",2010,"Considering Faith Within Culture When Caring for the Terminally Ill Muslim Patient and Family","Journal of Hospice & Palliative Nursing","This article explores the interrelation- ships between culture, faith, and caring for terminally ill Muslims.","USA","Muslims","Patients","Discussion","Lack of cultural competency by healthcare professionals, Muslim's cultural beliefs may conflict with Western methods of EoL care","To deliver effective culturally congruent care to a terminally ill Muslim patient, the Islamic rituals must be carried out in a way that recognizes and respects the cultural differences of this particular population. Assessing degree of accultruation, respect patients' modesty, consider dietary restrictions, permit prayer time, allow visitation time, understand decision making process with family, ","Nurses, healthcare practioners","NA","NA","Literature review","Praying, choice of clothing, dietary restrictions, visitation, decision making process, rites and rituals - as per Islamic Religion","Muslims prefer to die at home around family members and loved ones in accordance w/ Islamic traditions.  Eastern cultures use a collectivistic social model in which a healthcare decision is a family decision. People from eastern culture value physicians’ opinions and suggestions and trust western medicine because of its high technol- ogy and advanced preparation of the health profession- als. Muslims, however, still believe that Allah is the one who cures and physicians are a means used to do that.","For Muslims, the Islamic faith plays a significant role in guiding the cultural values and beliefs. It is imperative for nurses and other healthcare professionals to know and understand the value of the Islamic faith among Muslims. Terminally ill patients require specialized and sensitive care that addresses their physical, psychosocial, and spiri- tual needs. Ensuring the delivery of culturally sensitive care during the last stage of an individual’s life means a great deal to patients and families."]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Samanta",2012,"Equality for followers of South Asian religions in end-of-life care","Nursing ethics","Understanding how health professionals can meet challenges and opportunities for meeting religion and faith interests of patients of South Asian descent.","UK","South Asian","Carers, providers","Discussion","Lack of awareness of culture, religion and faith, together with stereotypical perspectives and prejudice can lead to institutional discrimination evidenced by inappropriate services and facilities, lack of access, and negative staff attitudes that can serve to discriminate against those who follow the minority ethnic faiths. \nSince it is customary for dying Muslims to receive numerous visits from family and friends, restricted organisational visiting policies can cause upset. ","Respect for cultural differences and religious differences, communication","Healthcare practioners, nurses","NA","NA","Review"," Its sects include Jainism, the Shaivas, the Swarinarayans and the Vaisnavas, each with their own sets of beliefs and modes of expression. Followers live a life of morality and worship and comply with a code of duty and conduct in the hope that their soul will be released from Sansa ̄ra or the cycle of birth and rebirth. Decisions about the treatment of, or its withdrawal from, terminally ill patients who lack capacity will tend to be made by the head of the family, and collective decision-making tends to be a pervasive and enduring norm. Following death, an oil lamp may be lit near the body, which is normally cremated within 24 hours of death. The devout Hindu will usually prefer to die at home. Faith operates as a normative force and obliges followers to act in particular ways. When embedded in cul- ture, it can influence profoundly personal conceptions of how the dying ought to be treated. Optimal care and communication can be impeded significantly since the faithful may be unable to explain their actions and beliefs to others. Recognition that faith, as a subjective truth, can be incomprehensible to others and impervious to rea- son is not a recent phenomenon.","Some followers of South Asian faiths believe that prolonging the dying process, particularly where this interferes with clarity of consciousness, ought to be avoided. ","Health-care organisational processes, structures and routines can have the uninten- tional effect of discriminating against members of certain faith groups even if individual health profes- sionals do not. The faith perspective of patients is an essential consideration for the promotion and safeguarding of human rights. Although a range of issues remain unexplored, robust and responsive policy initiatives together with educational campaigns will assist in furthering this critical agenda. For nurses, the guiding principle ought perhaps to be the promotion of fairness and equity, rather than equality for all, and to be achieved by treating each patient as a unique individual with his or her own specific needs.","Health professionals’ personal faith and belief has the potential to influence their practice, and a balance must be struck between their rights to freedom of thought, conscience and religion alongside those of their patients. While acknowledgement and reflection of carers’ personal values seems laudable, its implications as a policy initiative are problematic. While frank disclosure might facilitate the exercise of a patient’s self- determined choice, such obligations could infringe the human rights and privacy of health professionals. A better approach might be to implement targeted educational initiatives designed to enhance self- awareness of professionals to the extent to which religious and secular values can impact upon the provision of end-of-life care."]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Schim et al",2006,"Enhancing Cultural Competence Among Hospice Staff","American Journal of Hospice and Palliative\nMedicine","This article reports a study designed to test an educational intervention aimed at expanding cul- tural awareness, sensitivity, and competence with a multi- disciplinary and multilevel team of hospice workers. The purpose of this quasi-experimental, longitudinal, crossover design was to test the effects of an educational interven- tion for multidisciplinary hospice providers. ","USA","Diverse","Providers","Intervention ","Lack of cultural knowledge, patient load","Cultural competency, education","Healthcare practioners, hospice providers","Educational","The intervention program was a 1-hour educational session including some information on the specific populations served in the catchments of each agency office as reported on the hospice agency data sheet. Educational content was adapted from the End-of-Life Nursing Education Consortium Training Materials Module , “Cultural Considerations in the End-of-Life Care.”The module is congruent with the cultural competence model (including knowledge and attitude components), is easy to use, is applicable to many types and levels of hospice staff, and has received national recognition. ","The purpose of this quasi-experimental, longitudinal, crossover design was to test the effects of an educational intervention for multidisciplinary hospice providers. ","NA","An educational intervention focused on the concepts of cultural diversity, cultural knowl- edge, cultural awareness, and cultural competence behaviors served to enhance cultural competence as measured by CCA scores among hospice workers and volunteers. Further research is needed, but this work provides a good foundation for future studies from both intervention and methodologic perspec- tives. Even a limited “dose” of education in the form of a short talk and discussion raised cultural compe- tence behavior scores, and those scores continued to rise for several months after the intervention. ","Findings\ndemonstrated that even with a modest face-to-face inter- vention, cultural competence scores were significantly greater after the educational intervention for participants in both groups. The intervention proved suc- cessful at enhancing cultural competence scores among diverse types of hospice workers. Enhancement of cultural competence among hospice providers is a critical step toward achievement of societal goals regarding diversity, inclusion, and the provision of culturally congruent care.\n"]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Seale",2010,"The role of doctors’ religious faith and ethnicity in taking ethically controversial decisions during end-of-life care","J Med Ethics","The prevalence of religious faith among doctors and its relationship with decision-making in end-of-life care is not well documented. The impact of ethnic differences on this is also poorly understood. This study compares ethnicity and religious faith in the medical and general UK populations, and reports on their associations with ethically controversial decisions taken when providing care to dying patients.","UK","NA","Providers - medical practioners","Primary research"," Palliative care doctors are particularly unlikely to report decisions with some intent to end life, regardless of the strength of their reli- gious faith. The results also show that willingness to discuss with a competent patient a decision expected or partly intended to end life is less likely if a doctor is very or extremely religious, regardless of either speciality or ethnicity. This is similar to the finding from a US study, which found more religious doctors to be less likely to feel they should disclose information about procedures to which they objected on moral grounds (birth control for adolescents, abortion and ‘terminal sedation’ in dying). ","Whether religious or non-religious, it would seem advisable that doctors become more aware of how broader sets of values, such as those asso- ciated with religiosity or a non-religious outlook, may enter into their decision-making in end-of-life care.","Healthcare, palliative care staff","NA","NA"," A postal survey of 3733 UK medical practitioners, of whom 2923 reported on the care of their last patient who died.","specialists in palliative medicine are more likely to be Christian, white and report being ‘very or extremely religious’ than doctors in other specialities. Care of the elderly is a speciality more likely than others to contain Asian, Hindu or Muslim doctors. Doctors in ‘other hospital’ specialities are more likely than others to report being ‘very or extremely non-religious’. Stronger religious faith is associated with lower rates of continuous deep sedation, and speciality is also associated with variation in this, with lower rates being reported by palliative medicine specialists and higher rates by ‘other hospital’ specialists. Reporting a decision involving an expectation, or some degree of intent, to hasten the end of life is more likely among those who describe themselves as very or extremely non-religious, and in special- ities other than palliative medicine (particularly ‘other hospital’ specialities). Support for the legalisation of assisted dying is associated with ethnicity, with doctors describing themselves as ‘white’ being more likely than others to support legalisation.","he ethnic or cultural background of doctors is associated with the willingness to take certain end-of-life decisions. Reli- gious doctors in the USA and those who are Muslim or Hindu are more likely to object to physician-assisted suicide and terminal sedation; they are also less likely to feel they should disclose information about or refer patients for procedures to which they object on moral grounds.17 In the UK, a study of doctors in one hospital3 showed first that their ethnic and reli- gious composition differed significantly from that of the general population they served, with fewer Christian doctors and more Muslims or Hindus. Nurses on the other hand mirrored the general population in this respect. Religious views were not related to reported attitudes towards physician-assisted suicide. The authors acknowledge that their study was small.","Specialists in care of the elderly were somewhat more likely to be Hindu or Muslim than other doctors; palliative care specialists were somewhat more likely to be Christian, religious and ‘white’ than others. Ethnicity was largely unrelated to rates of reporting ethically controversial decisions. Independently of speciality, doctors who described themselves as non- religious were more likely than others to report having given continuous deep sedation until death, having taken decisions they expected or partly intended to end life, and to have discussed these decisions with patients judged to have the capacity to participate in discussions. Speciality was independently related to wide variations in the reporting of decisions taken with some intent to end life, with doctors in ‘other hospital’ specialities being almost 10 times as likely to report this when compared with palliative medicine specialists, regardless of religious faith."]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Sharma et al",2010,"Cross-Cultural Communication and Use of the Family Meeting in Palliative Care","American Journal of Hospice and Palliative\nMedicine","There- fore, the goal of this narrative review is to highlight the need for improving provider–family communication in the context of palliative care and to provide a practical framework for such communication in a cross-cultural setting where patients and families are at higher risk of receiving ineffective communica- tion. ","USA","NA","Providers","Narrative review","Ineffective provider-patient communication and relationship by disregarding cross cultural differences, not including the family and their preferences in information disclosure and decision making process, not asking patient questions to guage understanding of diagnosis, language barriers","SEE MAIN FINDINGS, ask about important cultural beliefs - related to faith, spirituality = increased understanding re: decision making process, inclusion of religious leaders if desired by family, clear goals of palliative care and reassure patient and family, language interpreters","Palliative healthcare professionals","NA","NA","Literature review, case study","clinicians should explore specific\nreligious and spiritual beliefs that may impact end-of-life preferences, understand the historical and political context of the patient’s life, assess decision-making role preferences, address communication and language barriers, and involve religious or community leaders when desired by the patient and family.","Muslim man has brain metases - frank disclosure form the ontology team put the patient into a state of shock \"truth telling\"","We provide a framework on how these issues can be incorporated, including the key elements of providing medical information (‘‘truth-telling’’), eliciting patient values and preferences regarding cultural beliefs about death and dying, exploring the family’s preferred role in decision making, and deliberation and decision making in the context of cultural beliefs related to respect for authority, filial piety, spirituality, and trust. As with other settings, providers should use a profes- sional medical interpreter when communicating with limited- English-proficiency patients and families and should use com- passion, kindness, and respect to foster trust with all patients and family members.","ABCDE\n􏰬 Advance preparation\n􏰬 Build a therapeutic relationship\n􏰬 Communicate well\n􏰬 Deal with patient’s and family’s reactions\n􏰬 Encourage/validate emotions\n(1) Ensure privacy\n(2) Allow adequate time\n(3) Assess patient’s/family’s understanding (4) Give information about diagnosis and\nprognosis\n(5) Encourage patients/family to express\nfeelings\n(6) Be empathic\n(7) Give a broad but realistic time-frame concerning prognosis\n(8) Arrange a review"]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Shubha",2007,"End-of-life care in the Indian context: The need for cultural sensitivity\n","Indian Journal of Palliative Care","This paper discusses some of the issues in providing culture-sensitive care, using examples from the Indian context.","NA","Indian","Providers","Review","Language and communication barriers, values between Western and other cultures may conflict with informed consent, advance care planning and deciion making, communication of bad news - ways to communicate this, locus of decision making, informed consent","Focus on psychosocial and spiritual well being of dying patient, cultural sensitivity, understanding, tolerance, awareness, understanding of family considerations, views of dying and truth telling","Healthcare providers, health care staff ","NA","NA","Reivew","In helping the dying patient to cope, the mental health or palliative care professionals try to make some sense of the individual’s dying experience. This involves helping the patient to find meaning in his or her painful experience. But for patients from Eastern cultures such as India, it is often a religious belief system that provides meaning. Most ancient spiritual traditions, including Hindu, Christian, Buddhist and Jain philosophies, see death as a normal stage of life and as imbued with meaning. Life and death are seen as one whole, where death is a part of life.[11] Death is also seen as a temporary phase, since it is eventually followed by reincarnation.","The emphasis on individual autonomy is often perceived as isolating rather than empowering in non-Western cultures. Eastern European medicine has had a long tradition of physician-centred, paternalistic decision-making. In Russian medicine, the physician rather than the patient or patient’s family often unilaterally determines a patient’s level of life support. In Asian, Indian and Pakistani cultures, family members and physicians may share decisional duties.","At the national level, India, with its diversity of religions, languages, castes and communities, presents a unique culture. At the same time, in India, culture- sensitive mental healthcare at the end of life is still in its infancy. Healthcare professionals, therefore, need to consider the entire sociocultural background of the patient, when trying to meet their needs. They also need to consider the needs of the patient’s family, since India is a collectivist culture. In conclusion, healthcare professionals need to focus on the physical, psychosocial and spiritual well-being of dying patients and provide culture-sensitive care in order to ensure a high quality of life and ‘good death’."]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Siriwardena",2004,"End-of-Life Care\nfor Ethnic Minority Groups","Clinical Cornerstone","This article examines end- of-life care for ethnic minority groups.","UK","Diverse","Providers","Discussion","insti- tutional discrimination, a lack of education and training in transcultural issues relating to health care, and a failure to appreciate the complexity of beliefs and needs in a protocol-driven health care system, Inequalities.  The reasons for these inequalities are complex and partly the result of a preference for more aggressive care; low interest in hospice care; and cultural differences among minority patients, eg, a family-oriented style of decision making, mistrust of the medical profession, language and communication barriers, financial constraints, transportation difficulties, and perception of racial bias.","Recommendations made by researchers to improve the care of ethnic minority patients at the end of life include information provided through appropriate literature, language interpretation, liaison services, equal opportunity strategies, staff training, systematic referral arrangements with health care practitioners, improved ethnic monitoring, and cultural sensitivity in service provision in palliative care. Attention to such details may well ameliorate the bereavement agencies.","Primary care physicians, healthcare professionals","NA","NA","Review","It is essential that spiritual aspects of end-of-life care be considered and that health care is sensitive to the cultural and religious beliefs of patients and their relatives. Christians and Judaism ephasizes life after death, but not reincarnation. Muslims regard death as inevitable and the afterlife of eternity is considered a gift.  Buddhism = dying is considered a part of life.","All faiths and cultures afford respect to the dead and to the body after death. \nIn the Sikh culture, although the family may wish to perform last offices or rites, it is acceptable for health staff to do so in their absence.  In the Hindu culture following a death, men and women from the family may wash the body.","Primary care physicians and health care teams have important lessons to learn about caring for dying patients from ethnic minority groups. Cultural aware- ness is part of a wider awareness of the diverse beliefs and needs of these patients. The variations within an ethnic minority group are as wide as the variations among the different groups. It is important to avoid a \"cookbook\" approach to the process of end-of-life care and to respect the rights of individuals, families, and groups to their cultural belief systems. The descriptions provided here of faith-specific require- ments are general guidelines only and should not take the place of sensitive inquiry of the patient or relatives."]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Smith et al",2008,"Racial and Ethnic Differences in Advance Care Planning Among Patients With Cancer: Impact of Terminal Illness Acknowledgment, Religiousness, and\nTreatment Preferences","Journal of Clinical Oncology","Despite well-documented racial and ethnic differences in advance care planning (ACP), we know little about why these differences exist. This study tested proposed mediators of racial/ethnic differences in ACP.","USA mutli-site","White, black and hispanic","Patients","Primary research","Mistrust, implicit or unconscious ratial bias may influence physician attitudes and comunication","Trust, communication, culturally appropriate EOL care among black and hispanic patients ","Healthcare practioners","NA","NA","Interviews\nWe studied 312 non-Hispanic white, 83 non-Hispanic black, and 73 Hispanic patients with advanced cancer in the Coping with Cancer study, a federally funded multisite prospective cohort study designed to examine racial/ethnic disparities in ACP and end-of-life care. We assessed the impact of terminal illness acknowledgment, religiousness, and treatment preferences on racial/ethnic differences in ACP.","Religious views within the African American community of the value or sanctity of life have been suggested as explanatory factors for differences in attitudes toward EOL care, though the study didn't find that because measure of religiousness was based on a single question.","A greater preference for life-sustaining treatment among African American and Hispanic patients compared with white patients has been described previously,7,8,28,38-41 although to our knowledge, this is the first study to describe differences between Hispanic and white patients with advanced cancer. We were surprised to find that treatment preferences had no appreciable impact on the observed racial and ethnic differences in ACP. These findings suggest that although important racial/ ethnic differences in treatment preferences exist, they are unlikely to be major explanatory factors in racial/ethnic differences in ACP.","Although we found important racial and ethnic differences in termi- nal illness acknowledgment, religiousness, and treatment preferences among patients with advanced cancer, none of these factors accounted for observed racial and ethnic differences in ACP. We found that black patients were nearly half and Hispanic patients nearly one quarter as likely as white patients to acknowledge their illness was terminal, black patients were nearly 70% more likely to consider religion very impor- tant, and black patients were three and Hispanic patients two times more likely than white patients to prefer life-prolonging care. Com- pared with white patients, black and Hispanic patients were 40% less likely to have an ACP. Yet this study was negative: these differences in ACP were not impacted by proposed mediators."]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Smith",2008,"End-of-Life Care Decision-\nMaking Processes of African\nAmerican Families","Journal of Ethnic and Cultural Diversity in Social Work","This paper addresses issues related to family end-of-life care decision making of African American families.","USA","African Americans","Patients","Primary research","Insufficient information, misunderstood information, skepticism, suspicion re: healthcare system","Increased awareness in EOL care decision making, practioners assessing older adult values, preferences re: family involvement in EOL care and multicultural sensitivity","Social workers, healthcare professionals","NA","NA","This study explores the end-of-life care decision making process of 15 African American families who had an elderly relative die by using a qualitative research design using in-depth interviews that were ethnographic in nature. A qualitative research design was selected be- cause of its proven effectiveness in studying topics that have been the subject of relatively little previous research ","\nMost family members (14 out of 15) indicated their faith, religious beliefs, or pastoral counseling was an important resource in making de- cisions regarding end-of-life care for their dying family member. One participant said that her sense of spirituality was helpful when making care and treatment decisions during her mother’s death and dying. She felt that families were connected by bonds that transcended death and were passed down from generation to generation.\nFamily caregivers also noted counseling from pastors as an important resource. ","The inclusiveness of family members in end-of-life care decision making is congruent with descriptions of the functioning and structure of many African American families found in background literature. Religious beliefs = important coping resources during critical periods of EOL for AA patients","Findings suggest that family participants’ end-of-life care decisions were charac- terized in thematic patterns focusing on the primacy of the dying family member’s wishes, inclusion of family members in the decision-making process, maximization of treatment options, and religious influences."]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Sneesby et al",2011,"Death and dying in Australia: perceptions of a Sudanese community","Journal of Advanced Nursing","The aims of this study were to obtain information to support Palliative Care healthcare workers to meet the needs of the Sudanese population in death, dying, and bereavement.","Australia","Sudanese","General","Primary Research","Language barriers, lack of knowledge, misunderstandings about western social structures including healthcare system and services","Don't make assumptions that certain cultural practises will apply to any given cultural group, healthcare workers should consult and communicate with patients, cultural sensitivities.  Discussion needs to take place to establish the relevant cultural aspects of care, whether it be with a community elder or male family member or the patient themselves. For healthcare professionals, verbal and non-verbal communication skills are essential to identify the cultural issues relevant to individual persons, without making assumptions, and to establish the right person (culturally) to make decisions and give consent.\n","Healthcare practioners","NA","NA","A qualitative interpretive approach was used with data collected from a sample of 15 participants during focus group discussions. Data were collected in 2008–2009, transcribed and analysed.","The main religions of Sudan are Christianity and Islam. All study participants identified themselves as Christians. Among these Sudanese, there is a sense of great faith in God. The participants found great strength in prayer and trust in God and the Bible, saying God has given them courage at times of adversity. When faced with death and illness, prayer helps.","Participants reported that Sudanese people tend not to seek medical assistance early but when they do there is an expectation that medication will be prescribed at each visit. This medication is often shared with other members of the family. They also tend to discontinue medication once symptoms have passed. Herbal remedies will often be used in conjunction with conventional medicine.  Reliance on natural herbs. \nWhen discussing disease and illness, there appeared a culture of blame. Prior to the war, participants identified the major cause of death in Sudan as old age or childhood deaths. There was consensus that bad news was withheld from patients and families until the community leaders could gather around to support and protect the people receiving the information.","he main themes and ideas identified in the dialogues were analysed under five main headings – Communication issues including disclosure and consent; Concepts of disease and illness; Attitudes towards medical treatments; Customs surrounding death, dying and bereavement; and Spiritual and religious issues."]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Taxis et al",2008,"Mexican Americans and Hospice Care","Journal of Hospice & Palliative Nursing","This qualitative study, conducted in two locations in the southwest part of the US explored the attitudes and experiences of Mexican Americans that influence decisions about EOL care and participation in hospice programs. ","USA","Mexican Americans","General","Primary Research","Language, embarassed to use hospice, Multiple factors have been attributed to the significantly poor utilization of hospice services by Hispanics in the US, including (a) limited English proficiency, (b) cultural characteris- tics that value stoicism, fatalism, and familism, (c) lack of understanding of the Hispanic culture on the part of healthcare providers, (d) lack of health insurance, (e) new or illegal immigrant status, and (f) lack of referral to hospice services.","See main findings","Hospice staff, healthcare providers, nurses","NA","NA","Interviews","Although most of the participants did not regularly attend religious services and three were not raised in the Catholic Church, nearly all of them described adhering to practices of the Catholic Church as part of the Mexican culture. Praying the rosary, having a priest administer the sacrament of anointing of the sick, and gathering for a novena (9 days of prayer) with family and friends after the death all were described as part of the Hispanic culture. These practices were described as comforting and vital in the process of death and subsequent bereavement. ","Personalismo is a Hispanic cultural value that is characterized by ‘‘warmth, closeness, and empathy in one’s relationship with others,’’ whereas familismo is ‘‘characterized by an enduring commitment and loyalty to immediate and extended family members.","The key findings include the need for (a) effective incorporation of the family with its cultural and spiritual values, (b) careful negotiation of the fluctuating need for the patient and family to both maintain and release control in EOL care, and (c) culturally and linguistically consistent communication. "]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["True et al",2005,"Treatment Preferences and Advance Care Planning at End of Life: The Role of Ethnicity and Spiritual Coping in Cancer Patients","The Society of Behavioral Medicine"," This study investigated differ- ences between African American and White patients with can- cer in their use of spirituality to cope with their cancer and examined the role of spiritual coping in preferences at end-of-life.","USA","African American and Whites","Patients","Secondary Research","Proposed reasons for these differences include mistrust of the health care system, lack of familiarity with advance care plan documents , economic disparities , and cultural beliefs and values regarding the “right time to die”","Awareness and understandings of religious and spiritual traditions as it is a source of strenght to cope with illness to many patients","Healthcare practioners","NA","NA","The authors analyzed data from interviews with 68 African American and White patients with an advanced stage of lung or colon cancer between December 1999 and June 2001.","Religious and spiritual beliefs have been shown to be integral to coping with serious illness for many pa- tients (19,21,25,26). Some researchers have indicated that reli- gion and spirituality play a more important role in coping for African American patients than for White patients","A number of studies, including our own, have reported that African American patients and families are more likely than Whites to want life-sustaining measures, no matter what the pa- tient’s condition, and are less likely to have an advance care plan document ","Similar high percentages of African American and White patients reported being “moderately to very spiritual” and “moderately to very religious.” African American patients were more likely to report using spirituality to cope with their cancer as compared to their White counterparts (p = .002). Pa- tients who reported belief in divine intervention were less likely to have a living will (p = .007). Belief in divine intervention, turning to higher power for strength, support and guidance, and using spirituality to cope with cancer were associated with pref- erence for cardiopulmonary resuscitation, mechanical ventila- tion, and hospitalization in a near-death scenario. "," It was found that patients with cancer who used spiritual coping to a greater extent were less likely to have a living will and more likely to desire life-sustaining measures. If efforts aimed at improving end-of-life care are to be successful, they must take into account the complex interplay of ethnicity and spirituality as they shape patients’ views and preferences around end of life."]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Van Wijmen et al",2010,"Advance Directives in the Netherlands:  An Empircal Contribution to the Exploration of a Cross-Cultural Perspective on Advance Directives\n","Bioethics","This study focuses on ADs in the Netherlands and introduces a cross-cultural perspective by comparing it with other countries.","Netherlands","Dutch","General","Primary research","NA","Confidence in physicians","Healthcare, policy makers","NA","NA","A questionnaire was sent to a panel comprising 1621 people representative of the Dutch population. The response was 86%.","Religiosity is positively associated with formulating an AD","NA","95% of the respondents didn’t have an AD, and 24% of these were not familiar with the idea of drawing up an AD. Most of those familiar with ADs knew about the Advanced Euthanasia Directive (AED, 64%). Both low education and the presence of a religious conviction that plays an important role in one’s life increase the chance of not wanting to draw up an AD. Also not having experienced a request for euthanasia from someone else, and the inconceivability of asking for euthanasia yourself, increase the chance of not wanting to draw up an AD.","This study shows that the subjects of palliative care and end-of- life-decision-making were very much dominated by the issue of euthanasia in the Netherlands. The AED was the best known AD; and factors that can be linked to euthanasia play an important role in whether or not people choose to draw up an AD. This differentiates the Netherlands from other countries and, when it comes to ADs, the global differences between countries and cultures are still so large that the highest possible goals, at this moment in time, are observing and possibly learning from other cultural settings."]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Venkatsalu et al",2014,"Dying at home: A qualitative study of the perspectives of older South Asians living in the United Kingdom","Palliative Medicine","To explore beliefs, attitudes and expectations expressed by older South Asians living in East London about dying at home.","UK","South Asians","General","Primary research","Consistent with other studies, we also found that some participants perceived that dying in settings other than their home would create a barrier between them and their family and would hinder opportunities for cultural and religious practices seen as essential to a peaceful death.","Dying at home, cultural sensitivity, decision making based on family re: EOL","Healthcare providers, health care staff ","NA","NA","A qualitative study using focus groups and semi-structured interviews. Data were analysed using a constructivist grounded theory approach.","The domestic home played a central role in this, both as a place where religious rituals could be practised at and around the time of death and as a place in which deeply held cultural values of family obligation and respect for one’s parents could be honoured. Muslim participants in our study appeared to place greater importance to the need to return to their homeland at the end of their life. There was a tendency for Hindu and Christian participants to report that they would be able to practise their own tradi- tional end-of-life rituals in the country where they were now living. This is in line with the findings of earlier stud- ies of the preferences of particular ethnic groups in relation to end-of-life care","Existing research suggests that migrants from South Asian countries increasingly view ‘home’ as where their family lives, leading to a new under- standing of ‘homeland’ in terms of cultural values.31 This observation resonates with the perceptions of South Asian participants in this study. ","Two key themes were identified. The theme of ‘reconsidering the homeland’ draws on the notion of ‘diaspora’ to help understand why for many participants, the physical place of death was perceived as less important than the opportunity to carry out cultural and religious practices surrounding death. The second theme ‘home as a haven’ describes participants’ accounts of how their home is a place in which it is possible to perform various cultural and religious rituals. Cultural and religious practices were often seen as essential to achieving a peaceful death and honouring religious and filial duties."," Older people of South Asian ethnicity living in East London perceive home as more than a physical location for dying relatives. They make efforts to adhere, and also adapt, to important social and cultural values relating to death and dying as part of the wider challenge of living in an emigrant society."]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Wesley et al",2004,"Educational needs of hospice social workers: Spiritual assessment and interventions with diverse populations","American Journal of Hospice and Palliative\nMedicine","Based on a national survey, this study analyzes the roles and educational needs of hospice social workers regarding assessment and interven- tion in spirituality, religion, and diver- sity of their patients.","USA","NA","Social workers","Primary research","Lack of tools, resources and knowledge regarding spiritual rituals","Respondents also requested more information regarding ways to discuss suicide, assisted suicide, and use of extraordinary means, such as feeding tubes and ventilators. They reported discussing these decision-making issues with patients and families. The ethical, legal, and emotional conse- quences for patients, families, and social workers, show a need for continuing education in this area.  Empathy and communication are key.","Social workers, healthcare professionals","NA","NA","Literature review and survey","For effective implementation of social work in hospice, social workers must understand their comfort level with spiritual issues and the comfort level of their patients. In this sample, the majority of respondents saw spiri- tuality and religion as very important to their clients, and the majority of respondents were very or somewhat comfortable in attending to their patients’ spiritual and religious needs. This is consistent with respondents’ personal attitudes toward religion and spirituality. However, these results contradict data from the literature which suggest that social workers tend to be uncomfortable with spirituality and religion in hospice care.  In the current study, only a minority of respondents expressed discomfort.","Respondents reported working with religious groups that ranged from Protestant and Roman Catholic traditions to Jehovah’s Witnesses, Muslims, and Unitarians. In regard to ethnic and cultural diversity, most patients were Caucasian; however, 85 percent of respondents reported that they had worked with African American patients. ","Results suggest that spiritual care is shared among hospice team members and that most social workers feel com- fortable in addressing these issues. However, role conflict and role ambi guity also exist. Respondents to the survey often felt ill-prepared to deal with some complex faith-based con- flicts related to diversity. They saw themselves in need of assessment models and end-of-life decision-making\ninterventions regarding assisted suicide and euthanasia. "]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["HOQOL SRPB Group",2006,"A cross-cultural study of spirituality, religion, and personal beliefs as components of quality of life\n","Social Science & Medicine","This paper reports on an international study in 18 countries  to observe how spirituality, religion and personal beliefs (SRPB) relate to quality of life (QoL). SRPB is assessed using the World Health Organization’s QoL Instrument (the WHOQOL), where eight additional facets were included to more fully address these issues as they pertain to QoL, along with physical, social, psychological and environmental domains. The facets address issues such as inner peace, faith, hope and optimism, and spiritual connection.","Multi-Site international","Diverse","Policy makers, providers","Primary research",null,null,"Policy makers","NA","NA","Centres administered the WHOQOL SRPB instru- ment to a minimum of 240 adults to participating worldwide sites.","Among palliative care patients in different cultures, existential well being made strongest contribution to overall QoL",null,"The results showed that SRPB was highly correlated with all of the WHOQOL domains (po0:01), although the strongest correlations were found with psychological and social domains and overall QoL. When all of the domain scores were entered into a stepwise hierarchal regression analysis, all of the domains contributed to overall quality of life, explaining 65% of the variance. When this was repeated for those people who reported poor health.  It was found that only four domains explain 52% of the variance. The first was the level of independence, followed by environment, SRPB and physical. Gender comparisons showed that despite showing lower scores for facets in the psychological domain, such as negative feelings and poorer cognitions, women still reported greater feelings of spiritual connection and faith than men. Those with less education reported greater faith but were less hopeful. It is suggested that SRPB should be more routinely addressed in assessment of QoL, as it can make a substantial difference in QoL particularly for those who report very poor health or are at the end of their life."]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Wiener et al",2013,"Cultural and religious considerations in pediatric palliative care","Palliative and Supportive Care","A growing multicultural society presents healthcare providers with a difficult task of providing appropriate care for individuals who have different life experiences, beliefs, value systems, religions, languages, and notions of healthcare. This is especially vital when end-of-life care is needed during childhood. There is a dearth of literature addressing cultural considerations in the pediatric palliative care field. As members of a specific culture often do not ascribe to the same religious traditions, the purpose of this article was to explore and review how culture and religion informs and shapes pediatric palliative care.","USA","Diverse","Patients and carers","Discussion","Breakdowns in communication can lead to im- proper diagnosis, inadequate pain management, underutilization of prescription medications, and dif- ficulty in obtaining informed consent between Latino patients and their medical providers.  Therefore, reluctance for parents to talk about end-of-life care may be based on the belief that acknowledgement of their child’s impending mortality may be self fulfilling.  Non verbal communication can be misunderstood in certain cultures. ","alliative care commands knowledge and respect of individual value systems, beliefs, family structure, religion, ethnic roots, and cultural norms, as well as group cultural practices. At the end of a child’s life, the focus needs to be on quality as defined by the family, not the provider. Supporting parents so that they can fulfill their traditional role as care- givers, protectors, decision makers, providers of love and physical tenderness, and instillers of faith requires an individualized ap- proach to end-of-life care. Respecting beliefs, cus- toms, and traditions with a focus on preserving the integrity and sanctity of the parent–child relationship is of utmost importance in pediatric palliative care.","Healcare providers, health care staff ","NA","NA","Comprehensive literature searches were completed through an online search of nine databases for articles published between 1980 and 2011","Whereas a guide for families of diverse faiths and religious traditions are important across cultures, the involvement of pastoral workers in pediatric palliative care is not universal. For example, Vietnamese families visited by the hospital chaplain often interpret this as a symbol of the child’s impending death. Latino families may not want mental health workers involved in the grief process because they believe it signifies their grief as pathological.","Child-rearing practices in different cultures may also play a role in decision making. Some cultures emphasize autonomy and independence, whereas others encourage boundary melding. Gender often plays a role in decision making. In both Asian and Latino families, the mother is typi- cally regarded as the primary caregiver; therefore, decisions will often be placed in her hands. However, when possible, Latino women will seek the permission of the child’s father before deciding to seek, continue, or discontinue treatment. Nodding the head in many Asian and Latino communities simply indicates listening, not agreement to what a healthcare professional is saying. Direct eye contact can be interpreted as aggressive in Chinese cultures.","The review of the literature provides insight into the influence of religion and how culture informs lifestyle and shapes the experiences of illness, pain, and end- of-life care. Recommendations for providing culturally sensitive end-of-life care are offered through the framework outlined in the Initiative for Pediatric Palliative Care Quality Improvement Project of 2002. Cultural traditions are dynamic, never static, and cannot be generalized to all families. Guidelines to aid in approaches to palliative care are provided, and providers are encouraged to define these important differences for each family under their care.","Thirty-seven articles met eligibility criteria. From these, seven distinct themes emerged that have implications for pediatric palliative care. These include the role of culture in decision-making, faith and the involvement of clergy, communication (spoken and unspoken language), communicating to children about death (truth telling), the meaning of pain and suffering, the meaning of death and dying, and location of end-of-life care."]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Wong et al",2007,"The experiences of Chinese family members of terminally ill patients – a qualitative study","Journal of Clinical Nursing","To describe and understand the experiences of Chinese family members of terminally ill patients during the end of life process in a palliative care unit.","Hong Kong","Chinese","Patients","Primary research","Lack of knowledge by family during  difficult period, including knowledge about the illness, the prognosis, the side effects of treatment and ways to manage pain as they are commited to care.","This study highlights how important it is for nurses to deliver culturally competent care. Families expected nurses to play an active role in providing information and emotional support. Nurses must acknow- ledge the needs of the families and give anticipatory guidance to meet these needs, such as reasons for admission and updates on the patient’s daily progress. Nurses could provide appropriate information to families on patients’ dietary requirement so that they could prepare appropriate food for\npatients.\nNurses should also aim to ensure adequate pain control\nfor the patient so that the families can have some peace of mind. Nurses could perform basic nursing care together with family members so that they could actively participate in the care of their relative and reduce their sense of helplessness.\nThe family members in this study considered it very important to be with the patient at death. Palliative care units should thus instigate policies and facilities to allow families to stay with patients as long as they like and be informed in time so that they can be with the dying relative.","Palliative healthcare professionals","NA","NA","A phenomenological study was conducted. Data were collected by semi- structured interviews. We interviewed a purposive sample of 20 family members of terminally ill patients in a palliative care unit in Hong Kong. The data were analysed following Colaizzi’s phenomenological methodology.","This study did not explore the influence of religious beliefs on informants’ experience. Informants’ coping and emotional reactions could be influenced by their religion. Buddhism is the main religion among Chinese the relationship between religious beliefs and grief reaction could be further investi- gated in future study.","Talking about death and dying is taboo among Chinese people, who believe that the dead are judged in after life and punished according to the sins that they have committed in life.The family is the primary social support system in Chinese societies. The findings suggested that the participants experienced anticipatory grief with a variety of emotions displayed, including anger, sadness, helplessness and finally acceptance. When anger was expressed, it tended to target the doctors. Anderson and Dimond (1995) similarly found in the United States that bereaved family members expressed anger towards healthcare professions for acts of omission. The findings of this study showed that some participants were not satisfied with the treatment of the patients and about the information that they received. Such anger might also result from fear or from feelings of loss. ","Family members experienced anticipatory grief, with reactions that inclu- ded anger, unease, sadness and helplessness. This was particularly acute when the patient was first admitted to the palliative care unit. However, the family members quickly accepted the reality and committed themselves to the care of the patient, seeking informational and emotional support from the nurses. The families wanted to be assured that the patient had been offered good care and suffered no pain. It was considered important to be with the patient during the dying process."," This study demonstrated that Chinese family members were committed to the care of the patients in the palliative care unit. Cultural beliefs played a part in influencing family emotions and concerns."]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Worth et al",2009,"Vulnerability and Access to Care for South Asian Sikh and Muslim Patients with Life Limiting Illness in Scotland: Prospective Longitudinal Qualitative Study","British Medical Journal","To examine the care experiences of South Asian Sikh andMuslim patients inScotland with life\nlimiting illness and their families and to understand the reasons forany difficulties with access to services and how these might be overcome.","Central Scotland UK","South Asians Sikh, Muslims","Patients, carers, professionals","Primary research","Barriers to accessing effective end of life careincluded resource constrained services; institutional and, occasionally, personal racial and religious discrirmination; limited awareness and understanding among South Asian people of the role of hospices; and difficulty discussing death. The most vulnerable patients, including recent migrants and those with poor English language skills, with no family advocate, and dying of non-malignant diseases were at particularly high risk of inadequate care.","Active case management of themost vulnerable patients and carers, and \"real time\" support, from where profession,als can obtain advice specific to an\nindividual patient and family, are the approaches most likelyto instigate noticeable improvements inaccessto\nhigh quality end of life care. Improving access to palliative care for all, particularly those with non malignant illnesses, as well as focusing on the specific needs of ethnic minority groups, is required.","Healthcare practioners","NA","NA","Prospective, longitudinal, qualitative design using in-depth interviews.","Illness and suffering viewed as God's will and test of faith, struggle to reconcile present suffering w/ promise of good afterlife"," A few patients found it challenging to accept personal care from non-Asian caregivers; concerns were\nexpressed about privacy and cultural misunderstandings. Prejudices about standards of behaviour and\ncleanliness of white people were also apparen.","Within ethnic minority groups the most vulnerable people, such as recent migrants, have the poorest access to services\nActive case management of high risk patients should help to overcome many of these barriers\nProfessionals need ready access to information and support specific to an individual patient and family"]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Yapp",2011,"Culture and End-of-Life Care: An Epidemiological Evaluation of Physicians","American Journal of Hospice and Palliative\nMedicine","The purpose of the study was to determine the degree to which cultural beliefs influence a physician’s decision to introduce the concept of hospice to terminally ill patients. ","USA","Diverse","Providers","Epidemiology","Physican-patient communication barriers, lack of training in palliative care and cultural diversity","The incorporation of culture competence, communication skills, and end-of-life discussions in medical school and residency curriculum would prepare physicians to initiate difficult dialogues with patients and their families.","Primary care physicians, healthcare professionals","NA","NA","Interviews. Through a phenomenological approach, the lived experiences of physicians were explored in order to gain insight into his or her perception of cultural influences in end-of-life decision making and hospice referrals. ","Interestingly, physician 3 noted that frequently the more religious patients are more accepting of the end-of-life diagnosis. The results of the study provide patients and allied health professionals with insights into the thought process of physicians with regard to culture and end-of-life issues. From the patient perspective, the results of this study provide a point of reference to draw upon when engaged in end-of-life discussions. The physician’s cultural separation creates a disconnect when communicating with patients. The participants in this study identified cultural issues and communication barriers inherent in physicians-patient relationships.","The physicians in the study reported that their cultural beliefs do not impose on the patient’s decision-making process. The physicians also reported the patient’s cultural beliefs impeded discussions regarding hospice services in most of the cases in which hospice referrals were delayed.","Analysis of the textural data revealed the following 5 themes: (a) physician personal perspectives, (b) physician perspectives on culture, (c) perspectives on hospice care, (d) communication with patients, and (e) training and experience.\n"]
["Author(s)","Year","Title","Journal","Study Aim","Location (Place & Density)","Ethnic Group","Targeted Population (e.g. patients, providers, carers, students, policy-makers)","Type of Paper (e.g. intervention, primary research, secondary analysis, epidemiology, commentary, discussion or theoretical)","Barriers to End-of-life Care","Enablers for End-of-life Care","Targeted Audience","Type of Intervention (e.g. individual, familial, community, societal, structural)","Intervention details","Methodology","Considered Religion or Spirituality (provide details)","Cultural-sensitivity to Non-dominant Canadian Groups ","Main Findings","Additional information related to the overall scoping question"]
["Zaide et al",2013,"Ethnicity, race, and advance directives in an inpatient palliative care consultation service","Palliative and Supportive Care","To understand the impact of a palliative care consultation on the completion of advance directives, on both whites and nonwhites.","USA","African American or black, Asian, Hispanic, and white ","Patients","Secondary Research","mistrust, confusion, and lack of conversation among physicians, patients, and family members ","Patient-practioner communication","Healthcare practioners","NA","NA","A chart review of all patients seen by the PCC service in an academic hospital over a 9-month period was performed. Data were compiled using gender, race, ethnicity, religion, and primary diagnosis. For this study, advance directives were defined as: “Do Not Resuscitate” (DNR) and/or “Do Not Intubate” (DNI).","Not directly addressed","Kwak and Haley (2005) found that Asians (like Hispa- nics) were more likely to prefer family-based decision making than were whites or African Americans. Mack et al. (2010) found that African-American patients receive “more life-prolonging measures and less comfort-directed care” at the end of life than do white patients, despite comparable rates of end- of-life discussions. Perkins et al. (2002) found that whites were more likely than African Americans and Hispanics to voice preferences regarding end-of-life care through AD execution.  Perkins et al. (2002) found that Mexican-American patients were more likely to entrust end-of-life decision making to their family members and the healthcare system than were whites, and that they typically did not dis- cuss their preferences with anyone.","This study demonstrates the significant impact of a palliative care consultation on the successful completion of ADs, particularly in African American patients. It clearly demonstrates that, despite racial, ethnic, and cultural differences documented in the literature, physicians and other healthcare practitioners should be encour- aged to have discussions regarding end-of-life preferences with patients and family members of all backgrounds.","Of the 400 medical records reviewed, 57% of patients were female and 71.3% documented their religion as Christian. The most common documented diagnosis was cancer (39.5%). Forty-seven percent reported their race as white. White patients completed more advance directives than did nonwhite patients both before (25.67% vs. 12.68%) and after (59.36% vs. 40.84%) PCC. There was a significantly higher proportion of whites who signed an advance directive after a PCC than of nonwhites; of the 139 whites who did not have an advance directive at admission, 63 signed an advance directive after a PCC compared with 186/60 nonwhites (45% vs. 32%, respectively). Further analysis revealed that African Americans differed from whites in the likelihood of advance directive execution rates pre-PCC, but not post-PCC."]

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["Type of Resource (e.g. report, video, website, checklist etc.)","Search Source","Source URL","Resource URL","Title","Organization(s) ","Free (Yes/No)","Targeted Cultural / Religious Group","Targeted Audience (e.g. patients, providers, carers, students, policy-makers)","Nature of Approach (e.g. culturally- specific, safe etc.)","Enablers for End-of-life Care","Barriers for End-of-life Care","Resource Details (includes description or summary)","Style (e.g. interactive web resource, best-practice guideline etc.)","Limitations and Challenges Identified by Resource","Limitations and Challenges of Resource","Key Messages / Recommendations","Additional information related to the overall scoping question"]
["Report: Scoping review","Key informant recommendation","http://www.bccancer.bc.ca/","http://www.bccancer.bc.ca/nr/rdonlyres/e17d408a-c0db-40fa-9682-9dd914bb771f/28582/colour030408_con.pdf","Cross-Cultural Considerations in Promoting Advance Care Planning in Canada","BC Cancer Agency","Yes","Aboriginal, black, Chinese, Filipino, South Asian, Deaf ","Health care professionals, physicians, nurses, social care workers","culturally-safe","(i) Key informants from the Aboriginal group discussed specific rituals that they practiced when a loved one was dying and talked about how they valued dying at home. \n(ii) Black Canadians emphasized how important the community was and what an influence the community could have.\n(iii) For Chinese persons, when it came to choosing quality or quantity of life, longevity was said to be more important. They mentioned that Chinese patients may find the concept of ACP odd because normally the family would make all the EOL decisions, not the individual/patient. Our Chinese key informants also talked about wanting to protect the family member and not tell them their prognosis which is one of the many issues raised surrounding the value of ‘truth-telling’ in the Western biomedical system.\n(iv) Filipino key informants emphasized the importance of having a relationship with God and how their Catholic religion played a role in their decision-making at the EOL. They said it was important for the family to care for their loved-ones at the EOL and for family members to die at home with family providing their own brand of palliative care. Because the family plays such a large role at the EOL, Filipino people felt that the ACP conversation should be brought up by and discussed within the family.\n(v) The Deaf key informants said that ACP was not a concept that Deaf persons were aware of and that knowledge about palliative and EOL services was desired. They expressed a need for health care professionals to gain a greater understanding about suffering in the context of being Deaf and for Deaf people to have access to sign language interpreters at medical appointments and in hospital settings. At the EOL, the ability to sign decreases as the dying person weakens; this makes alternative options necessary to ensure sure the Deaf person’s voice is heard.\n","(i) Aboriginal persons expressed how the process of having the ACP discussion was strange for them because death was seen as a natural progression of life, and planning for something that was going to happen was incongruent with their beliefs. \n(ii) Aboriginal persons who lived in rural communities expressed the hardships related to having limited access to palliative and EOL care services.\n(iii) Black Canadians reported that ACP was not practiced in their culture because planning for their death would mean that there was no more hope for the person. Black Canadians expressed that lack of communication with health care professionals made them feel left out of the medical system. For example, they were not familiar with medical terminology, especially EOL terms such as “palliative” or “ACP”. Due to these communication barriers some Black Canadians felt that they could not fully participate in their medical care/decisions.\n(iv) Chinese Canadian informants reported that the topic of death was seen as “unlucky” and a word that they avoided using.\n(v) South Asian informants viewed dying as the wish of God, therefore planning for one’s death was seen as unnecessary.\n(vi) South Asian informants viewed dying as the wish of God, therefore planning for one’s death was seen as unnecessary. Like the Chinese informants, they did not like talking about death and the extended family played a large role in patient care. When choosing who would make their medical-decisions should they become incapacitated, gender roles were an important factor.","This research paper addresses cultural considerations in promoting ACP in Canada, and builds upon previous work commissioned by Health Canada and the Secretariat on Palliative and End-of-Life Care. ACP was identified as an issue in the Senate report, Of Life and Death (The Special Senate Committee on Euthanasia and Assisted Suicide, 1995), and Quality End-of-Life Care: The Right over Every Canadian (Subcommittee to update “Of Life and Death” & Standing Senate Committee on Social Affairs, Science and Technology, 2000), and in Health Canada’s National Action Planning Workshop on End-of-Life Care. Workshop Report (Tomlinson, 2002). Health Canada Synthesis Research Project: Integrated End-of-Life Care (Wilson et al., 2003a), Still Not There (Carstairs, 2005), Health Canada’s Advance Care Planning: The Glossary Project (Dunbrack, 2006), and the Canadian Strategy on Palliative and End-of-Life Care’s Advance Care Planning – An Environmental Scan (Barry Ashpole and Associates, Inc., 2005) are just four more recent reports to identify gaps, trends, and issues in this emerging field.","Research paper / report to identify best-practice guidelines for culturally-competent advanced care planning","(i) System-related barriers exist because most facilities have not been designed for cultural diversity, favouring instead a one-size-fits-all approach to care. Limitations in personnel or materials may hinder a facility’s ability to adjust care to the various ways people approach death and dying. Some settings, such as the ICU, may be unable to accommodate certain needs.","(i) First, the sample employed may limit the generalizability of the results.\n(ii) Second, to fit within our definition of “culture,” the research team had intended to included key informants who were people with disabilities, however, there were some difficulties finding key informants who represented the disabled community in Canada, as well as in the Caribbean, Haitian, and Filipino community in Central Canada.\n(iii) Lastly, as mentioned throughout the report, there was confusion around general medical EOL procedures and terms.","(i) Public Education - There is a need to organize a national campaign to help Canadians become more comfortable with the topic of death.\n- Normalization of death and dying.\n- Increase understanding of death and dying.\n- Education about what palliative care is.\n- Information about resources available (e.g. hospice).\n- Greater understanding of ACP and development of evidence-based practice.\n- Gauging public response to these campaigns, to gain greater knowledge regarding when is the best time to introduce ACP or who is best to conduct the discussion.\n(ii) To implement policy on ACP does not mean that everyone is required to have a document filled out (i.e., an advance directive), but what it does is offer the opportunity to every Canadian to have this discussion with their loved ones and/or health care professions so that their voices are heard.\n(iii) Participants believed that ACP was essential and had great potential for EOL care. However, making the ACP specific to situation, circumstance, and disease would make the ACP more valid and relevant to each patient/family context.\n(iv) Regarding culture, key informants stressed that the beliefs, values and traditions they were expressing were not necessarily shared by all in their cultural group.\n(v) Medical schools in Canada should offer Palliative Care, not as an option/elective but a routine part of the curriculum including ACP, cross-cultural considerations and specific communication/counselling skills needed for EOL care.\n(vi) Professional schools should provide incentives for non-mainstream students to complete their studies and establish their practices in high-need communities.\n(vii) The Canadian Medical Association or Health Canada should make Palliative Care an official Medical Specialty offered as part of the continuity of care throughout hospitals and care facilities.\n(viii) There is a need for national and provincial funding agencies to provide research dollars for palliative and EOL care research.\n(ix) Further research on ACP is also required. ACP is not an exclusive palliative care concept although it is often associated with EOL.\n(x) Organizations/health care facilities should create pathways to help guide HCP in their ACP conversations.\n(xi) To implement ACP, HCP require training and/or a team (e.g., physician, nurse, social worker, psychologist, chaplain) that not only can handle ACP but is also skilled in dealing with diverse minority groups.\n(xii) It is important to be respectful of all people, regardless of culture.\n(xiv) Engage communities to develop outreach programs to ensure that everyone knows about and has access to adequate services.","N/A"]
["Type of Resource (e.g. report, video, website, checklist etc.)","Search Source","Source URL","Resource URL","Title","Organization(s) ","Free (Yes/No)","Targeted Cultural / Religious Group","Targeted Audience (e.g. patients, providers, carers, students, policy-makers)","Nature of Approach (e.g. culturally- specific, safe etc.)","Enablers for End-of-life Care","Barriers for End-of-life Care","Resource Details (includes description or summary)","Style (e.g. interactive web resource, best-practice guideline etc.)","Limitations and Challenges Identified by Resource","Limitations and Challenges of Resource","Key Messages / Recommendations","Additional information related to the overall scoping question"]
["Literature Review of Best Practices","Key informant recommendation","http://www.partnershipagainstcancer.ca/wp-content/uploads/3.2.2.13-CPAC_CJ_Support_Review_0408_E.pdf","http://www.partnershipagainstcancer.ca/","Providing Culturally Competent\nSupportive Cancer Care\nFor Underserved Populations","Cancer Journey Action Group &\nCanadian Partnership Against Cancer ","Yes","Underserved populations: Some groups of patients are at a higher risk of poor health outcomes as a result of barriers that prevent them from receiving adequate care.","Health care professionals, physicians, nurses, social care workers & policy makers","culturally-sensitive","Effective and Promising Supportive Care Interventions:\n(i) Patient navigation programs were useful in providing basic information and increasing screening within different groups.\n(ii) Community outreach programs have also been effective in providing information and increasing cancer screening. This intervention has been applied to both Aboriginal and multicultural communities.\n(iii) Remote support groups have been shown to be effective for rural communities.\n\nPromising interventions:\n(i) An internet platform, which can be effective for information delivery, as well as psychosocial/ emotional support. One proviso is that underserved populations often need to be helped with access to computers and internet connections. This intervention has been shown to be effective for rural situations; it may have potential for Aboriginal and multicultural communities.\n(ii) Face-to-face support groups and internet support groups can both be effective if adapted to specific populations.\n(iii) One-on-one counseling, peer counseling and telephone counseling may likewise be useful among specific groups.\n(iv) Finally, sport activities such as the dragon boat racing that is popular with breast cancer survivors, can possibly be adapted as a supportive intervention among underserved populations with a wider range of cancers.","Ineffective Interventions:\n(i) Any intervention will be relatively ineffective if it cannot be understood by the people for whom it was intended. In this light, it is not surprising that one of the main categories of potentially ineffective interventions is information/education. Simply translating existing English materials into other languages is not enough; the information needs to be presented in a cultural context and at an appropriate literacy level.\n(ii) Educational content will also be ineffective if it is perceived to lack credibility. While the internet can be a source of good and helpful information, many studies noted that the lack of controls and expert review may lead to inaccuracies being disseminated and detrimental outcomes for cancer patients from underserved populations.\n(iii) Another concern related to privacy, specifically with respect to internet support groups. It is especially unfortunate when already underserved patients are exposed to situations where their personal information is not protected.\n(iv) A final category of ineffectiveness among underserved groups would include those few interventions with no demonstrated value in any type of population. For example, many of the physical support interventions for insomnia and fatigue were demonstrated to be at best inconclusive.\n(v) As well, in one study, specialist breast cancer nurses were shown to be ineffective in the domain of psychosocial support","The report assesses best practices in providing culturally competent supportive cancer care for underserved populations and highlights many deficiencies in the provision of both supportive cancer care for underserved populations and general interpretation services in health care settings. The report focuses on 3 sections:\n(i) Supportive cancer interventions for underserved poulations\n(ii) Essential elements of supportive cancer care for underserved populations\n(iii) Interpreter services\n","Research paper / report to identify best-practice guidelines for culturally-competent supportive cancer care","Limitations and gaps related to interpreter services:\n(i) Inconsistent quality of interpreter services\n(ii) Unavailability of interpreter services\n(iii) The most effective models of service provision have yet to be determined\n(iv) Removing language barriers does not necessarily remove cultural barriers\n(v) Physicians are often untrained in the use of interpreters\n(vi) The costs/benefits of interpreter services are largely unknown","There are a number of limitations to the scope of both the literature survey and the report. In searching the literature, only publications in black or more formal grey literature were considered. Websites, discussion forums, and other online resources were not consulted, except as pointers to other appropriate sources. Only English language publications were included. This review does not critically evaluate the publications, nor does it attempt a meta-analysis. Results and conclusions made in the literature are accepted as stated by the authors, unless challenged in later academic publications. All research summarized in the literature was assumed to be conducted to accepted standards, and the quality and integrity of the studies themselves were not questioned or evaluated.","The report has revealed some of the most obvious gaps and limitations among the current evidence:\n(i) Any supportive care program proposed should be evaluated for efficacy, effectiveness and, ideally, cost-effectiveness.\n(ii) There must be more studies exploring how cultural beliefs and attitudes influence health care needs, including the unique way this happens from group to group.\n(iii) Universal measures of cancer care effectiveness should be established and accepted, so that quality can be consistently improved and different studies can be compared.\n(iv) Clinical trials of psychosocial interventions need to conform to high standards in terms of design, reporting and interpretation.\n(v) More research should be developed for Canadian programs and populations, as the majority of studies have been conducted in the U.S., specifically among African American or Hispanic populations.\n(vi) Research projects should be embedded within communities of interest, perhaps using a Community-Based Participatory Research model.\n(vii) There needs to be more studies conducted on supportive care for all types of cancers; to date, a few cancers dominate the field, in particular, breast cancer.\n(viii) More research is needed on interpreter service provision, including more randomized controlled trials to demonstrate the effectiveness of various models of delivery. This needs to include measures of accuracy and patient and provider satisfaction.\n\nTo conclude, the provision of supportive cancer care to underserved populations is still in early stages of development; there is much to be learned and even more that has to be done in order to meet the needs of patients at all phases along the cancer care continuum. Two things are abundantly clear, there is a serious and consistent need for supportive care among cancer patients, and a whole host of professional and informal caregivers are fully dedicated to this cause. This includes well-established personnel such as physicians and family members; among underserved populations, it includes other roles of increasing importance, such as interpreters and patient navigators.","N/A"]
["Type of Resource (e.g. report, video, website, checklist etc.)","Search Source","Source URL","Resource URL","Title","Organization(s) ","Free (Yes/No)","Targeted Cultural / Religious Group","Targeted Audience (e.g. patients, providers, carers, students, policy-makers)","Nature of Approach (e.g. culturally- specific, safe etc.)","Enablers for End-of-life Care","Barriers for End-of-life Care","Resource Details (includes description or summary)","Style (e.g. interactive web resource, best-practice guideline etc.)","Limitations and Challenges Identified by Resource","Limitations and Challenges of Resource","Key Messages / Recommendations","Additional information related to the overall scoping question"]
["Ethnic specific modules as part of a curriculum in ethnogeratrics","Growthhouse website","http://web.stanford.edu/","http://web.stanford.edu/group/ethnoger/","Introduction to the Ethnic Specific Modules","Stanford Geriatric Education Center","Yes","Asian Indian; Chinese; Filipino; Jpanese; Korean; Native Hawaiian/PI; Pakistani & Southeast Asian","students from various health care disciplines","culturally-sensitive","Enablers such as participation in and access to health and related services are noted in each ethnic specific module for each targeted cultural group listed (in I6).","Barriers such as participation in and access to health and related services are noted in each ethnic specific module for each targeted cultural group listed (in I6).","Ethnic Specific Modules, designed by the Collaborative on Ethnogeriatric Education complements the more generic Core Curriculum in Ethnogeriatrics developed previously. The Collaborative is composed of 42 representatives of 34 Geriatric Education Centers who have worked together to design and develop the Ethnogeriatric Curriculum for health care training programs in all health care disciplines. Ethnic specific learning modules were designed to use the same format and outline of the original five modules in the Core Curriculum in Ethnogeriatrics, which include description, learning objectives, content, instructional strategies, student evaluation questions, and references and resources including websites. The tables, figures, and cases in each module are formatted so that they can be used for overheads or handouts. It is highly recommended that these ethnic specific modules be used in conjunction with the more comprehensive coverage on ethnogeriatric topics and resources in the Core Curriculum in Ethnogeriatrics.","web-based ethnic specific modle as a part of a core curriculum in Ethnogeriatrics","Limitations and challenges are noted in each ethnic specific module for each targeted cultural group listed (in I6). ","A theme running through all the modules is the heterogeneity of the populations of elders they describe. The Collaborative members felt that it was very important not to lump ethnic groups together more than necessary, so that in the Asian/Pacific Islander section there are eight separate modules. Because of the different interests and perspectives of the different authors, each of the modules is somewhat unique in the content that is included. As with any curriculum, these modules will need to be updated as the years go by. The modules must be updated at some future time if resources allow for it. Furthermore, there have been questions about adding other modules. Some have suggested there should be a module on White elders.","The Collaborative on Ethnogeriatric Education is proud to present the Ethnic Specific Modules to complement the more generic Core Curriculum in Ethnogeriatrics developed previously. The Collaborative is composed of 42 representatives of 34 Geriatric Education Centers who have worked together to design and develop the Ethnogeriatric Curriculum for health care training programs in all health care disciplines. \n\nA theme running through all the modules is the heterogeneity of the populations of elders they describe. The Collaborative members felt that it was very important not to lump ethnic groups together more than necessary, so that in the Asian/Pacific Islander section there are eight separate modules. Because of the different interests and perspectives of the different authors, each of the modules is somewhat unique in the content that is included. \n\nAll, however, are designed to use the same format and outline of the original five modules in the Core Curriculum in Ethnogeriatrics, which include description, learning objectives, content, instructional strategies, student evaluation questions, and references and resources including websites. The tables, figures, and cases in each module are formatted so that they can be used for overheads or handouts. It is highly recommended that these ethnic specific modules be used in conjunction with the more comprehensive coverage on ethnogeriatric topics and resources in the Core Curriculum in Ethnogeriatrics.\n\nIn most cases, modules contain very little information comparing that population of elders to the elders of other ethnic minority populations. The tables that follow this Introduction are included for those who would like that kind of comparative data on the four ethnic minority categories of elders, although they do not include information of the ethnic subgroups in each category"]
["Type of Resource (e.g. report, video, website, checklist etc.)","Search Source","Source URL","Resource URL","Title","Organization(s) ","Free (Yes/No)","Targeted Cultural / Religious Group","Targeted Audience (e.g. patients, providers, carers, students, policy-makers)","Nature of Approach (e.g. culturally- specific, safe etc.)","Enablers for End-of-life Care","Barriers for End-of-life Care","Resource Details (includes description or summary)","Style (e.g. interactive web resource, best-practice guideline etc.)","Limitations and Challenges Identified by Resource","Limitations and Challenges of Resource","Key Messages / Recommendations","Additional information related to the overall scoping question"]
["Book: Clinical guide for nurses for or spiritual care","Key informant recommendation","N/A","N/A","Religion: A Clinical Guide for Nurses","N/A","No","Anabaptist-Descended Groups: Amish, Brethren, Hutterites, and\nMennonites; Anglicans and Episcopalians; Atheists; Baptists; Buddhists; Christian Scientists; Hindus; IFCA International Christians; Jehovah’s Witnesses; Jews; Latter-Day Saints (Mormons); Lutherans; Methodists (Wesleyans); Modern Pagans; Muslims; Orthodox Christians; Pentecostals; Presbyterians and Others in the Reformed Tradition; Roman Catholics; Seventh-Day Adventists; Sikhs; Unitarian Universalists","Nurses ","culturally-safe","This book offers an attempt to correct for this dearth of nursing-relevant information\nabout religions. The information in this book can help nurses to avoid being\nnegligent to patients whose religiosity overtly and covertly influences\ntheir responses to health-related challenges and transitions. Furthermore,\nthis book—alongside its conceptually oriented companion by Marsha\nFowler and colleagues, Religion, Religious Ethics, and Nursing—works to\nredress the damage done by the prevailing discourse in the nursing literature\nthat disparages religion in favor of a generic spirituality. Yet this\nbook does try to not blindly promote religiosity. It recognizes its potential\nfor harm as well as for good in the health care arena.","Lack of attention in spiritual care regarding:\n(i) diversity of diets members actually eat and how this often varies with the\ncultural background \n(ii) emphasis on religious practices and beliefs of dominant culture (Christianity) and lack of attention on religious practices and beliefs of minority cultures \n(iii) lack of information regarding how different religious groups think\nabout suffering and cope with illness—cognitively or socially.","Section I chapters that precede the contributions describing various religions offer context and guidance for clinical practice. An explanation on why patient religiosity is important for nurses to support is found in Chapter 1, as well as some brief contextual background about what religion is. Chapter 2 provides information about how to talk with patients about religion, a fundamental skill for respecting the religiosity of patients and their loved ones. Following on these communication skills is Chapter 3, which offers information about how to assess religiosity. Because religion at the bedside often manifests in overt rituals, Chapter 4 addresses how nurses can support such rituals. To ethically and legally integrate this information in clinical care, Chapters 5 and 6 offer legal and ethical perspectives, respectively. Because ethical nursing care in this regard requires an awareness of self and how personal religiosity (or lack thereof) influences caring, Chapter 7 provides discussion and opportunity for reflection about how a nurse’s religiosity inevitably has an impact on nursing practice.","Book: Clinical guide for nurses for spiritual care (best practices guide)","Lack of attention in spiritual care regarding:\n(i) diversity of diets members actually eat and how this often varies with the\ncultural background \n(ii) emphasis on religious practices and beliefs of dominant culture (Christianity) and lack of attention on religious practices and beliefs of minority cultures \n(iii) lack of information regarding how different religious groups think\nabout suffering and cope with illness—cognitively or socially.","(i) Specifically targets nurses, but does not target other providers working in health-related disciplines \n(ii) Does not consider intersectional perspectives (i.e. gender, socioeconomic status etc. in relation to religion)\n","Research evidence indicates direct associations between religion and\nhealth:\n- Nurses have many reasons for recognizing patient religiosity. These include\nthe fact that religion is prevalent, that some religious practices\nhave health-related implications, and that some health-related events\nhave religious implications for adherents of some religions, and professional\nmandates.\n- Religion serves many functions, from social cohesion to intrapsychic\ncomfort.\n- When religion lacks personal spirituality (whole person relatedness), it\nbecomes harmful."]
["Type of Resource (e.g. report, video, website, checklist etc.)","Search Source","Source URL","Resource URL","Title","Organization(s) ","Free (Yes/No)","Targeted Cultural / Religious Group","Targeted Audience (e.g. patients, providers, carers, students, policy-makers)","Nature of Approach (e.g. culturally- specific, safe etc.)","Enablers for End-of-life Care","Barriers for End-of-life Care","Resource Details (includes description or summary)","Style (e.g. interactive web resource, best-practice guideline etc.)","Limitations and Challenges Identified by Resource","Limitations and Challenges of Resource","Key Messages / Recommendations","Additional information related to the overall scoping question"]
["Research report: based on in-depth interviews with families ","Key informant recommendation","http://www.chcf.org/","http://www.chcf.org/publications/2014/11/gather-round-culture-eol#ixzz3NUqoQtbF","Gather Round: Understanding How Culture Frames End-of-Life Choices for Patients and Families\n\n","California Healthcare Foundation","Yes","Asian; African American; Hispanic & White","Health care professionals, physicians, nurses, social care workers & policy makers","culturally-sensitive","(i) During the end-of-life experience, both patients and families undergo emotional learning. This process requires time for people to notice, react to, and come to terms with their powerful feelings.\n(ii) Folk knowledge of care wishes already exist. The research found that people have informal, but deeply significant, ideas about the end of life, including values about health care, how to evaluate care scenarios, the sanctity of life, and the disposition of one's body after death.\n(iii) Cultures vary subtly but fundamentally compared to the mainstream framework for decisionmaking. As one example, the report looks at in-depth interviews with Chinese American patients and families and how their cultural approach affects the health care decisions they make.\n","(i) Providers making assumptions abuot what patients and families bring to interactions with the health care system without deepling listening to their ideas and personal stories about death and dying\n(ii) Patients and doctors have trouble reaching alignment on EoL care because of a mismatch of perspectives about time, information, and empathy\n(iii) Some providers fail to recognize the persectives of patients may seem insensitive","This research — based on in-depth interviews with families — examines the process of learning and decisionmaking that people often experience as they or their loved ones approach the end of life. It juxtaposes those processes with the medical framework generally used by health care providers. The aim is for genuine, shared decisionmaking that results in effective, patient-centered care.","Research report of best-practice guidelines","Limitations and challenges for are noted as barriers that are manifested through healthh care provision (in I6). ","(i) Research participants are categorized quite broadly and their views may not be representative of other cultural or religious groups\n(ii) Does not consider intersectional perspectives (i.e. gender, socioeconomic status etc. in relation to religion)\n(iii) Focuses mostly on health care practices rather than broader socioeconomic and religious factors","(i) Use the notion of the 'independent self' to better empathize with patients and family members\n(ii) Recognize that the style of decisionmaking may be fundamentally different from mainstream American expectations: ambiguously located with the family group, seeming to ignore the centrality of patient wishes, oriented toward continuing treatment regimens until the care options resolve themselves\n(iii) Expect that the patients and families will be cautious in sharing information inside their families; providers may need to push them to the edge of their comfort zone to maximize their chances of making fully informed choices\n(iv) Seek out young adults in the family to act as a cultural bridge while keeping the family authority figures engaged in the dialog"]
["Type of Resource (e.g. report, video, website, checklist etc.)","Search Source","Source URL","Resource URL","Title","Organization(s) ","Free (Yes/No)","Targeted Cultural / Religious Group","Targeted Audience (e.g. patients, providers, carers, students, policy-makers)","Nature of Approach (e.g. culturally- specific, safe etc.)","Enablers for End-of-life Care","Barriers for End-of-life Care","Resource Details (includes description or summary)","Style (e.g. interactive web resource, best-practice guideline etc.)","Limitations and Challenges Identified by Resource","Limitations and Challenges of Resource","Key Messages / Recommendations","Additional information related to the overall scoping question"]
["Website","Google","http://www.dimensionsofculture.com","http://www.dimensionsofculture.com/2010/11/cultural-aspects-of-death-and-dying/ ","Cultural Aspects of Death and Dying","Dimensions of Culture","Yes","Native American, Buddhist, Islam, Christianity, Chinese, Hispanic","Health care professionals, physicians, nurses","Culturally-sensitive","While health care providers cannot be expected to know the mourning ceremonies and traditions of each family’s culture, understanding some basics about how different cultures may prepare for and respond to death is important. \n\nThough difficult to ask, there are crucial questions that need to be part of conversations between doctors and nurses and families. For example:\nWhat are the cultural rituals for coping with dying, the deceased person’s body, the final arrangements for the body and honoring the death?\nWhat are the family’s beliefs about what happens after death?\nWhat does the family consider to be the roles of each family member in handling the death?\nWho should the doctor talk to about test results or diagnosis?\nAre certain types of death less acceptable (for example, suicide) or are certain types of death especially hard to handle for that culture (for example, the death of a child – this example may seem too obvious, but in countries with high infant mortality, there are indeed different attitudes about the loss of children.)\n\nPatients and families should be viewed as a source of knowledge about their special/cultural needs and norms\nDegree of acculturation is paramount in determining the beliefs and traditions a family will follow when coping with impending death, post death arrangements and mourning","Providers are sometimes are at a loss about what to ask under trying circumstances.\nSometimes providers too heavily rely on cultural references books and that may be less useful, but instead should interact directly with patient and patient's family as a source of knowledge\n\nLanguage barriers and communication challenges\n\nEx. For many cultures, such a direct approach may seem harsh, and decisions about something like organ donation might be experienced as inhumane immediately upon death.  ","This article addresses various cultural aspects of death and dying.  It provides healthcare professionals with key questions and points to consider when dealing with patients' end of life care.  This ariticle provides an overview on important religious and cultural points of consideration which include monotheistic religions, ancestor worship, Buddhism and Hinduism, Truth telling to patients, expressions of grief.  ","Best practice guideline","Limitations and challenges are identified in barriers - language and communication issues, misunderstanding","Does not consider intersectional perspectives (gender, socioeconomic status in relation to culture and religion)\nFocuses mainly on healthcare practises rather than broader socioecnomic and religious factors","(i) Healthcare professionals should ask crucial questions identified in order to understand the cultural needs and norms\n(ii) understand that Patients may have different communication patterns than from Western expectations - ex. Telling test results or diagnosis\n(iii) Acknowledge that family members are sources of knowledge\n(iv)in cultures where ancestor worship is common, acceptance of organ donation and cremation may be low\n"]
["Type of Resource (e.g. report, video, website, checklist etc.)","Search Source","Source URL","Resource URL","Title","Organization(s) ","Free (Yes/No)","Targeted Cultural / Religious Group","Targeted Audience (e.g. patients, providers, carers, students, policy-makers)","Nature of Approach (e.g. culturally- specific, safe etc.)","Enablers for End-of-life Care","Barriers for End-of-life Care","Resource Details (includes description or summary)","Style (e.g. interactive web resource, best-practice guideline etc.)","Limitations and Challenges Identified by Resource","Limitations and Challenges of Resource","Key Messages / Recommendations","Additional information related to the overall scoping question"]
["Website","Google","http://healthtrainingonline.com.au","http://healthtrainingonline.com.au/assets/Resources/Palliative%20Care/136382_importance_of_culture_a","Access Denied","Health Training Online","No",{"$nulls":5},"Health Training Online has been delivering high quality, nationally-recognised health administration training with the aim of providing vocational education and training to the primary care workforce Australia-wide.\n\n",null,null,"Access is not granted unless you are enrolled with a login"]
["Type of Resource (e.g. report, video, website, checklist etc.)","Search Source","Source URL","Resource URL","Title","Organization(s) ","Free (Yes/No)","Targeted Cultural / Religious Group","Targeted Audience (e.g. patients, providers, carers, students, policy-makers)","Nature of Approach (e.g. culturally- specific, safe etc.)","Enablers for End-of-life Care","Barriers for End-of-life Care","Resource Details (includes description or summary)","Style (e.g. interactive web resource, best-practice guideline etc.)","Limitations and Challenges Identified by Resource","Limitations and Challenges of Resource","Key Messages / Recommendations","Additional information related to the overall scoping question"]
["Online outreach guide","Google","http://www.caringinfo.org","http://www.caringinfo.org/files/public/outreach/chinese_american_outreach_guide.pdf","Chinese American Outreach Guide","National Hospice and Palliative Care Organization.","Yes","Chinese-American","Healthcare professionals","Culturally sensitive","(i) understand basic methods of Traditional Chinese Medicine because some Chinese-Americans may treat conditions w/ TCM before seeking the care of a doctor\n(ii) Recruit community Liaison - enhances credibility \n(iii) gather feedback from the community before begining outreach initiatives\n(iv) use culturally appropriate language \n(v) develop and distribute helfpul resources","Language and communication barriers\nLack of central neighborhood = makes it difficult to reach population\nSpeaking about death may be considered \"taboo\" within Chinese Culture","This resource is a best practises guideline for healthcare practitioners when dealing with Chinese-Americans.  It provides an overview of key facts about Chinese-American (demographics, history, socio-ecnomics, language, healthcare practises, EOL care cultural beliefs and attitudes and religion).  It also provides information about building partnerships in the Chinese-American comunity and provides outreach strategies and community engaging resources for healthcare professionals.","Best practice guideline","Lack of central neighborhood where people congregate presented a challenge to determine how to best reach community","(i) Only specifically targets Chinese-Americans, but many of the key learning points can be transferred to other similar cultural groups","(i) engage Chinese-Americans in your community \nA. Form a Community Advisory Committee or Coalition\nB. Assess Healthcare Providers\nC. Provide Education and Training About End-of-Life Care\nD. Develop and Distribute Helpful Resources\nE. Cultivate Volunteers\nF. Engage the Chinese-American Media\n\nWhile talking about death may be a taboo subject in Chinese culture, there is not a well documented ‘fear of\ndeath’ among Chinese.  Buddhism, Taoism, and Confucianism all perceive death in a positive and open\nminded light. \nDying peacefully is important to Chinese people, hospice is a novel concept to Chinese American people, many of those who are dying do not want to burden their loved ones, EOL planning is something they would do after diagnosis, not before the crisis"]
["Type of Resource (e.g. report, video, website, checklist etc.)","Search Source","Source URL","Resource URL","Title","Organization(s) ","Free (Yes/No)","Targeted Cultural / Religious Group","Targeted Audience (e.g. patients, providers, carers, students, policy-makers)","Nature of Approach (e.g. culturally- specific, safe etc.)","Enablers for End-of-life Care","Barriers for End-of-life Care","Resource Details (includes description or summary)","Style (e.g. interactive web resource, best-practice guideline etc.)","Limitations and Challenges Identified by Resource","Limitations and Challenges of Resource","Key Messages / Recommendations","Additional information related to the overall scoping question"]
["Website that promotes culturally sensitive EOLworkshops, tools and resources","Google","http://coalitionccc.org","http://coalitionccc.org/what-we-do/cultural-diversity-eol-care/","CULTURAL DIVERSITY & EOL CARE","Coalition for Compassionate Care of California","Yes","Korean, Chinese, Tagalog, Vietnamese, Russian","Patients, physicians","Culturally sensitive","(i) understand your own cultural biases and behaviors","(i) language barriers","This resource is a page off of the Coalition of Compassionate Care of California that promotes workshops, tools and resources that this organization provides to help healthcare professionals develop understandings of cultural differences and increase everyone's access to quality EOL care, regardless of race, ethnicity of cultural differences.  ","Web resource that prmotes workshops, tools provided by the organization","N/A","(i) Very limited in scope and information, aimed as a webpage to promote workshops the organization provides","(i) identify your own cultural biases and behaviors and increase cultural awareness to understand cultural differences wherever possible"]
["Type of Resource (e.g. report, video, website, checklist etc.)","Search Source","Source URL","Resource URL","Title","Organization(s) ","Free (Yes/No)","Targeted Cultural / Religious Group","Targeted Audience (e.g. patients, providers, carers, students, policy-makers)","Nature of Approach (e.g. culturally- specific, safe etc.)","Enablers for End-of-life Care","Barriers for End-of-life Care","Resource Details (includes description or summary)","Style (e.g. interactive web resource, best-practice guideline etc.)","Limitations and Challenges Identified by Resource","Limitations and Challenges of Resource","Key Messages / Recommendations","Additional information related to the overall scoping question"]
["Website","Google","http://www.culturaldiversity.com.au","http://www.culturaldiversity.com.au/resources/practice-guides/palliative-care","Palliative Care\n","Centre for Cultural Diversity in Ageing","Yes","Not identified","Providers","Culturally sensitive","Issues around communication must be addressed by the palliative care team - not only to ensure the provision of accurate and appropriate physical care, but also to establish a meaningful relationship with care recipients and their families. Often a highly stressful time, it is essential that care recipients and their families have access to culturally appropriate emotional and spiritual support.\n\nCulturally appropriate palliative care necessitates a special type of cultural awareness - an understanding of death and dying from different cultural perspectives. The palliative care team should be aware of the cultural and religious factors that can influence the way care recipients and their families respond to these events, and the way pain and suffering are perceived and expressed.\n\nAn understanding of specific cultural and religious practices around death, dying and bereavement will assist in the provision of culturally appropriate palliative care. However, as with all care services, it is always important to identify and support individual needs and preferences and not assume that all people from the same culture or religion practice the same rituals or share the same beliefs.\n\nDeath and dying are among the most significant and sacred events of all societies. It is therefore imperative that palliative care services respect and support the customs, beliefs, rituals and practices that can provide meaning and comfort to care recipients and their families at this time.","Langauage barriers, communication barriers, lack of cultural awareness","This resource is a short best practises guide/summary that provides a general overview of EOL care.  This resource broadly addresses culturally sensitive EOL care and provides key considerations for health practioners around death and dying.","Quick best practises web resource"," As with all care services, it is always important to identify and support individual needs and preferences and not assume that all people from the same culture or religion practice the same rituals or share the same beliefs.","Resource is very general - does not specifically address cultural or linguistic or religious groups\nParticipants broadly categorized","Key Considerations\n\nUse professional interpreting services when care plans are developed and reviewed - and whenever informed consent is required.\nPrior to the palliative care assessment, establish the willingness and ability of care recipients and their families to discuss issues around death and dying, including the appropriateness of such terms.\nConsult care recipients and their families regarding whether or not open discussion of diagnosis and prognosis is appreciated - and balance this with legal requirements around issues of informed consent.\nEnsure all palliative care services identify and support the cultural, linguistic and spiritual needs of care recipients and their families, including rituals and practices around death and dying.\nEstablish the cultural and religious impact on the acceptability of certain treatments and medications.\nUnderstand that people will have different interpretations of the concept of quality of life, and that these may be culturally determined.\nClearly establish the role of family members in decision-making about care and treatment.\nResolve any conflicts around palliative care between staff and care recipients and/or family members by highlighting culturally appropriate strategies that are acceptable to all involved.\nProvide information about palliative care and support services in the preferred language of care recipients and their families.\nEnsure palliative care recipients and their families have access to culturally appropriate emotional support and spiritual support.\nEnsure that staff responsible for providing palliative care have been trained in cultural awareness and appropriate communication.\n\n"]
["Type of Resource (e.g. report, video, website, checklist etc.)","Search Source","Source URL","Resource URL","Title","Organization(s) ","Free (Yes/No)","Targeted Cultural / Religious Group","Targeted Audience (e.g. patients, providers, carers, students, policy-makers)","Nature of Approach (e.g. culturally- specific, safe etc.)","Enablers for End-of-life Care","Barriers for End-of-life Care","Resource Details (includes description or summary)","Style (e.g. interactive web resource, best-practice guideline etc.)","Limitations and Challenges Identified by Resource","Limitations and Challenges of Resource","Key Messages / Recommendations","Additional information related to the overall scoping question"]
["Online Manual/Guide","Google","http://www.jointcommission.org","http://www.jointcommission.org/assets/1/6/aroadmapforhospitalsfinalversion727.pdf","Advancing Effective Communication,\nCultural Competence, and\nPatient- and Family-Centered Care - A Roadmap for Hospitals","The Joint Commission","Yes","All culturally diverse groups","Providers","Culturally sensitive and competent EOL care","(I) Address communication needs during EOL care \n(ii) involve patient's family in EOL decisions\n(iii) identify patient cultural, religious, spiritual beliefs and practises at EOL","Language barriers, communication barriers, assumptions by providers","This best practises guide/resource provides a guide for hospitals to provide culturally competent care to patients, it provides a method for hospitals to begin or improve their efforts to esnure all patients receive high quality care in a culturally sensitive manner.","Best practises guideline","Communication issues, lack of awareness about cultural differences on EOL care\nCultural differences may conflict with traditional medical methods","Does not provide information on specific cultural groups or examples\nEOL section very broad","Chapter 4 of this manual provides information on EOL care\n\nEach patient has unique beliefs and preferences, and several\ncultural, religious, and spiritual considerations may arise\nduring end-of-life care. Staff should respect the patient’s\nneeds and approach the following issues with sensitivity:\n• Openly discussing death and dying\n• Completing advance directives\n• Acknowledging the end of life\n• Discussing organ and tissue donation\n• Performing rituals prior to and after death\n• Positioning or touching the patient as death\napproaches\n• Identifying the individuals the patient wants to be\npresent during the dying process and at death,\nincluding family members, friends, religious leaders,\nand cultural leaders\n• Removing and disposing of tubes and needles\n• Using sedation\n• Washing of the body\n• Moving the body after death\n• Allowing individuals to remain with or near the body\nafter death"]
["Type of Resource (e.g. report, video, website, checklist etc.)","Search Source","Source URL","Resource URL","Title","Organization(s) ","Free (Yes/No)","Targeted Cultural / Religious Group","Targeted Audience (e.g. patients, providers, carers, students, policy-makers)","Nature of Approach (e.g. culturally- specific, safe etc.)","Enablers for End-of-life Care","Barriers for End-of-life Care","Resource Details (includes description or summary)","Style (e.g. interactive web resource, best-practice guideline etc.)","Limitations and Challenges Identified by Resource","Limitations and Challenges of Resource","Key Messages / Recommendations","Additional information related to the overall scoping question"]
["Video - Ted Talk","Google","Www.ted.com","http://www.ted.com/talks/kelli_swazey_life_that_doesn_t_end_with_death","Life That Doesn't End With Death","Ted - Kelly Swazey","Yes","Various - (those mentioned include, Indonesia)","General public","Culturally and socially sensitive","Self awareness, valuing other kinds of knowledge about life and death, understand that death is not universally experienced in the same way","N/A","This TED talk video by Kelly Swazey takes a look at the Tana Toraja culture in Indonesia where weddings and births aren't the social gatherings that knit society together.  Funerals form the centre of social life.  In this culture, bodies of dead relatives are cared for even years after they've passed.  While it sounds strange to Western sensibilities, she says, this could actually be a truer reflection of the fact that relationships with loved ones don’t simply end when breathing does. ","Ted Talk - Video","Traditional Western medical understandings view death as biological, but death is a process and meanings around end of life and death persist even after termination of biological processes. ","Video is very broad and general.  Aimed to bring general awareness to the social and cultural differences in death and end of life.","View of death is rooted in social and cutural worlds through which we define phenoma raound us.  Death is not niversally experienced in the same way, but in this culture, death is viewed as visible and remarkable where the emphasis is on enduring relationships."]
["Type of Resource (e.g. report, video, website, checklist etc.)","Search Source","Source URL","Resource URL","Title","Organization(s) ","Free (Yes/No)","Targeted Cultural / Religious Group","Targeted Audience (e.g. patients, providers, carers, students, policy-makers)","Nature of Approach (e.g. culturally- specific, safe etc.)","Enablers for End-of-life Care","Barriers for End-of-life Care","Resource Details (includes description or summary)","Style (e.g. interactive web resource, best-practice guideline etc.)","Limitations and Challenges Identified by Resource","Limitations and Challenges of Resource","Key Messages / Recommendations","Additional information related to the overall scoping question"]
["Website","Google","http://www.caresearch.com.au","http://www.caresearch.com.au/caresearch/tabid/943/Default.aspx","About Palliative Care","Caresearch Palliative Care Knowledge Network","Yes","Not identified - everyone","Patients, providers, families","Culturally sensitive","Having information on EOL care means making choices may be easier, means being an equal partner in making decisions which in turn reduce fear and uncertainty, and may help regain a sense of control.","Lack of information, lack of understanding on the process, fear, uncertainty","CareSearch is an online resource designed to help those needing relevant and trustworthy information and resources about palliative care. The website has been funded by the Australian Government's Department of Health and Ageing.\n\nThere are sections designed specifically for health professionals and others for patients, for carers, and for family and friends. All material in the website has been checked for quality by Australian health professionals.  This online resource describes general information abou palliative care and how to support patients during the EOL process.  It provides info to providers and families as well.  ","Interactive web resource","Fear, misudnerstandings","Is generally a very broad resource and does not provide specific information on EOL care or cultural, religious or spiritual differences.\n\nStates that EOL care can help patients when they are dying but does not specifically identify how, why or why palliative care is improtant.","Palliative care can help to improve quality of a patients' life when patients are having active treatment.  It aims to support patients during the EOL process."]
["Type of Resource (e.g. report, video, website, checklist etc.)","Search Source","Source URL","Resource URL","Title","Organization(s) ","Free (Yes/No)","Targeted Cultural / Religious Group","Targeted Audience (e.g. patients, providers, carers, students, policy-makers)","Nature of Approach (e.g. culturally- specific, safe etc.)","Enablers for End-of-life Care","Barriers for End-of-life Care","Resource Details (includes description or summary)","Style (e.g. interactive web resource, best-practice guideline etc.)","Limitations and Challenges Identified by Resource","Limitations and Challenges of Resource","Key Messages / Recommendations","Additional information related to the overall scoping question"]
["Website (collection of multilingual brochures)","Google","http://www.palliativecare.org.au/","http://www.palliativecare.org.au/Default.aspx?tabid=2116","Multilingual resources\nWhat is palliative care?\nAbout the dying process","The Commonwealth of Australia and Palliative Care Australia","Yes","Arabic, Chiense, Croatian, Dari, Farsi, French, Greek, Italian, Japanese, Khmer, Korean, Macedonian, Maltese, Polish, Portugese, Russian, Serbian, Spanish, Traditional Chinese, Turkish, Vietnamese","Patients","Culturally specific","Improving quality of life for patients, their families and careers by providing care that addresses the many needs patients, families and careers have such as physical, incl. treatment of pain and other symptoms) emotional, social, cultural and spiritual.  To help person live as well as possible.  Support is offered to help family and careers manage during the patients illness and in bereavement.  \n\nWhen patients are well informed, participate in treatment, decisions and communicate openly with doctors and other health professionals, this helps make their care as effective as possible","Lack of communication and engagement between patients and health care professionals.","A brochure by the Australian Government and Pallative Care Australia printed in many languages that provides key information about EOL care and key contacts in Australia for patients.","2 page brochure","N/A","General two page brochure aimed to provide general information to patients about EOL planning and care.","Engagement between patients, families and providers is key.\nCommunication and discussions aobut appointment a subsitute decision maker is important, care planning is important process in ensuring patient's wishes, in relation to care are met."]
["Type of Resource (e.g. report, video, website, checklist etc.)","Search Source","Source URL","Resource URL","Title","Organization(s) ","Free (Yes/No)","Targeted Cultural / Religious Group","Targeted Audience (e.g. patients, providers, carers, students, policy-makers)","Nature of Approach (e.g. culturally- specific, safe etc.)","Enablers for End-of-life Care","Barriers for End-of-life Care","Resource Details (includes description or summary)","Style (e.g. interactive web resource, best-practice guideline etc.)","Limitations and Challenges Identified by Resource","Limitations and Challenges of Resource","Key Messages / Recommendations","Additional information related to the overall scoping question"]
["Online Manual/Guide","Google","http://www.palliativecare.org.au","http://www.palliativecare.org.au/Portals/9/docs/publications/guidelines.pdf","Multicultural\nPalliative Care\nGuidelines","The Commonwealth of Australia and Palliative Care Australia","Yes","Arabic, Chiense, Croatian, Dari, Farsi, French, Greek, Italian, Japanese, Khmer, Korean, Macedonian, Maltese, Polish, Portugese, Russian, Serbian, Spanish, Traditional Chinese, Turkish, Vietnamese","Health care professionals, physicians, nurses","Culturally and religiously specific and safe","In working with people from other cultures, we inevitably bring with us our own attitudes and beliefs, learnt mostly in childhood. Each participant in a conversation also represents various factors to the other, in areas such as age, status, and gender and, at times disability. Questions\nthat we may regard as ‘standard’ may offend or embarrass others. We must be sensitive in our use of words, striving to avoid condescension and rather to be regarded as having empathy.\nTo encourage an open relationship, it is important not to leap to stereotyped conclusions, but rather, that we seek to learn about the beliefs and needs of the person who has come to us for help. Confessing that we know little of another’s culture and seeking to learn more about it is a large step towards bridging the gap between cultures.\nEach cultural group is by no means homogeneous; some community leaders are well integrated in to Australian society and seek an open ‘one size fits all’ dialogue, but most are cautious, unwilling to upset the strongly traditional members of their community. Producing pamphlets that will be acceptable to an elderly person with only basic literacy skills in their mother tongue, but not insulting to a recent tertiary graduate of that country, requires careful consultation and consideration.\nWe should understand that the provision of written material or an interpreter does not entirely solve the problem. The social strata in many ethnic communities are very strongly adhered to and thus if we provide an interpreter from a different stratum to that of the patient and their family then we may insult them. Consideration of gender is important when conveying information – in some societies and with some conditions, information conveyed by a man to a woman or vice versa would be considered highly improper. It is also important to find out who we should be addressing when conveying information about a patient’s condition. In some cases, it would be the patient themselves, others the spouse or the eldest son. If we are not sure, then we must ask what is appropriate. There is no harm in acknowledging our limited knowledge of a particular culture and its customs but there may be significant harm if we ignore our limitations and insult or otherwise breach important customs.","Homogenizing a group, stereotyped conclusions, language barriers, generalizations about a cultural or religious group","This best practises guideline is comprehensive and addresses general understandings of EOL care for health professionals and others working in or associated with palliative care.  This is a multicultural guideline produced through a collaborative approach.  In this manual, information about various religions and cultures dominant in Australia are provided.  Awareness of key issue sfor migrants are essential.  Information about place of treatment, communication of diagnosis/prognosis, role of family, professionals, attitudies towards pain relief, tabboo words and handling of the body and burial are provided for the cultures identified.  ","Best practice guideline (comprehensive)","Communication and language barriers","This brochure did not present issues of gender intersectionality or socioeconomic ","Practice guidelines \n· Consider a family meeting. The key decision-maker may not be the same person as the\nprimary caregiver. Be aware of family dynamics, and power relationships.\n· Although people with a moderate comprehension of English may appear to understand\ndiscussions, use a professional interpreter to communicate complex medical information.\n· Offer the family the opportunity to have a Priest or religious adviser in attendance, to assist\nwith prayer and other rituals.\n· Do not hesitate to ask about other relevant cultural aspects. It is respectful to show an\ninterest in other cultures.\n· Ensure the family and the patient understands the benefits that Palliative Care can offer.\nReinforce to the family that the patient can be more in control if better informed.\n· Identify and respect protective behaviour.\n· Allow time and be aware of customs that show respect. This will help to establish a strong\nrapport with the patient, family and their friends. (It is highly respectful to drink a beverage\nwith the family.)\n· Use written material to help disseminate information to all family members and others.\n· If some basic information is given, this can be followed by an invitation to ask questions. The\nquestions may indicate to us some information about the speaker, as well as clarify their\nexpectations of us.\n","· Be aware of possible high expectations that doctors and nurses may be expected to\ncompletely relieve all symptoms.\n· Do not assume that patients will have an extended family that is able to support the dying\nperson. Seek out culturally specific community services. Where these are not available,\ndiscuss patient and family needs with local service providers.\n· If a referral to community services is initially declined, seek further opportunities for referral.\n· Although emotional support may be declined, recognise anxious behaviour and assess if this\nis an appeal for help.\n· Anger that may be directed at you should not be taken personally.\n· Be prepared to seek additional support for yourself if required.\n· Attempt to accommodate, within reason, the large numbers of visitors for a hospitalised\npatient.\n· Attempt to establish beliefs and fears surrounding pain-relieving medication.\n· Show sensitivity and understanding towards patients who may resist using pain medication.\n· Use published material to educate the patient and family regarding the benefits of morphine\nand to dispel myths.\n· Introduce information gradually using non-medical terminology and assess if it is being\nunderstood.\n· Recruit assistance from other community services if necessary.\n· It is a highly respectful gesture to offer condolences at the funeral service or cemetery."]
["Type of Resource (e.g. report, video, website, checklist etc.)","Search Source","Source URL","Resource URL","Title","Organization(s) ","Free (Yes/No)","Targeted Cultural / Religious Group","Targeted Audience (e.g. patients, providers, carers, students, policy-makers)","Nature of Approach (e.g. culturally- specific, safe etc.)","Enablers for End-of-life Care","Barriers for End-of-life Care","Resource Details (includes description or summary)","Style (e.g. interactive web resource, best-practice guideline etc.)","Limitations and Challenges Identified by Resource","Limitations and Challenges of Resource","Key Messages / Recommendations","Additional information related to the overall scoping question"]
[null,"Google","http://www2.mariecurie.org.uk","http://www2.mariecurie.org.uk/Documents/WHO-WE-ARE/Diversity/Palliative%20care%20BAME%20report%20June%202013.pdf","Palliative Care and end of life care for Black, Asian and Minority ethnic groups in the UK\nDemographic profile and the current state of palliative and end of life care provision","Public Health England, King's College London, Marie Curie Cancer Care","Yes","Black, Asian and Minority Ethnic groups in the UK","Policy makers, providers","Culturally sensitive","Common suggestions for improvements include more training in cultural competency and communication skills, wider availability of translation services and advocates. Involvement with the community and recruiting people from BAME groups was also strongly encouraged.\nimportance of cultural\ncompetency and communication skills training for healthcare professionals. Being sensitive and developing open, two-way conversations with patients and families was also encouraged.","Difficulty ensuring EOL care that is accessible and appropriate","This report therefore provides an evidence-base to understand the profile of BAME populations living in the UK, and identifies their unmet needs regarding palliative and end of life care. Firstly, we describe the characteristics of BAME groups in the UK (ethnic groups by age and geographical region, religion, language and characteristics of the foreign born population). We examine to what extent the BAME populations are expected to increase and grow older in the next few decades according to the most recent population projections. Secondly, we appraise the state of palliative and end of life care provision for BAME groups and present recommendations for policy, practice and research available from the literature. Lastly, based on these two sources of information we present further recommendations with the aim to improve care for BAME populations in the UK.","Web manual","Making assumptions about how patients behave.","N/A","Unmet needs/disparities in access to palliative and end of life care and explanatory factors:\nLower uptake compared to White/majority groups\nLack of referrals, knowledge and information\n• Lack of referrals\n• Lack of knowledge of services (patients and professionals)\n• Lack of knowledge about what hospice care involves\n• Information not available in different languages/formats for those who do not speak English or cannot read\n• Lack of cultural equivalents for words such as hospice\nReligious and family issues\n• Hospice care conflicting with religion (giving up faith on God’s power)\n• Avoidance of open disclosure due to religious/family values\n• Assumptions from patients (care is not available nor accessible) and care providers (family will provide care)\nStructural/demographic/epidemiological issues\n• Previous negative care experiences: racism, insensitivity, lack of cultural awareness\n• Geographical location of hospices; services not available in rural areas; postcode lottery\n• Social segregation and social exclusion; disparities in the cancer continuum\n• Socio-economic factors (income, deprivation, no health insurance)\n• BAME groups younger than the majority White populations\n• Lower prevalence of certain types of cancer and higher prevalence of chronic conditions","Communication\n• Poor communication\n– Lack of sensitivity to cultural and religious issues\n– Lack of translation resources and advocates\n– Problems with using family/friends as translators\n– Low number of minority doctors\n– Scarce availability of training to help professionals\n– Consequences: mistreatment; unmet religious needs; uncertainty and stress for professionals\nEnd of life decisions\n• Less likely to complete advance care planning documents and more likely to desire life-sustaining/aggressive treatments (mostly USA data)\n– Mistrust from patients\n– Influence of religion (God is the one to decide)\n– Western values of autonomy/right to self-determination not applicable to everyone and contrast with family/community decision-making\nOutcomes, home death and satisfaction with care\n• Pain control\n– Worse pain outcomes and insufficient availability of opioid medication (mostly USA data)\n– Pain severity underestimated (e.g. due to language)\n– Lack of awareness from professionals that people have different attitudes and responses to pain\n• Less likely to die at home than the majority White\n• Less satisfied with care, lower care ratings/more problematic caregiving role"]
["Type of Resource (e.g. report, video, website, checklist etc.)","Search Source","Source URL","Resource URL","Title","Organization(s) ","Free (Yes/No)","Targeted Cultural / Religious Group","Targeted Audience (e.g. patients, providers, carers, students, policy-makers)","Nature of Approach (e.g. culturally- specific, safe etc.)","Enablers for End-of-life Care","Barriers for End-of-life Care","Resource Details (includes description or summary)","Style (e.g. interactive web resource, best-practice guideline etc.)","Limitations and Challenges Identified by Resource","Limitations and Challenges of Resource","Key Messages / Recommendations","Additional information related to the overall scoping question"]
["Website","Google","http://www.growthhouse.org","http://www.growthhouse.org/stanford/elc_handbook_v181.pdf","END-OF-LIFE CARE CURRICULUM FOR\nMEDICAL TEACHERS","Stanford Faculty Development Center End of Life Care Curriculum for Medial Teachers, Stanford University School of Medicine","Ges","Not identified - everyone","Medical Teachers","Culturally sensitive","Avoid potentially disrespectful behavior such as examination of pupils or pain test\n• Silence: ‘The Pause’\n- There will come a pause, at which point everyone acknowledges what has happened\n- There is value here in silence\n- People have a tendency to hurry past this moment\n- Slow them down: this is an important skill\nHelp them be in this moment\nIt will soon pass and be gone forever\n- Connect the bereaved to support systems\n- This is especially critical for:\nTraumatic, unexpected, or violent death\nDeath of a child","Assumptions about patients' culture or religion","Why a curriculum is needed\nUntil recently, end-of-life care has been neglected in physician training. A number of studies\nshow serious deficiencies in end-of-life care (ELC), both in the U.S. and in other countries. This\nhas resulted in bad dying experiences for patients, their families, physicians and other health care\nworkers. With support from the Robert Wood Johnson Foundation, the Stanford Faculty\nDevelopment Center (SFDC) developed a 16-hour faculty development course incorporating\nbasic material designed to be used by physicians in any area of expertise. This web-based\ncurriculum is an adaptation of materials developed for that course.\nThe overall goals are to enhance physician skills in ELC, foster a commitment to improving care for the\ndying, improve the dying experience for patients, families, and health care providers, and improve\nteaching related to ELC.","Web Curriculum","Presumptious attitudes about EOL care and death","Teaching curriculum for medical teachers so not consider intersectional perspectives (gender, socioeconomic status in relation to culture and religion)\nFocuses mainly on medical practises, rather than broader socioecnomic and religious factors ","Cultural Sensitivity\nCulture is a dynamic process, involving much more than ethnicity and ‘cook-book’ lists. Skills can be\ndeveloped to help the clinician deal with a variety of cross-cultural issues. In general, EOL\ncommunication requires sensitivity and skill. The level of complexity increases when we consider\ndiffering backgrounds of the stakeholders. These are some of the challenges in teaching this subject:\n• Dying patients and families often depend upon assistance from others of different backgrounds\n• Language differences present enormous challenges to communication\n• There is prejudice and mistrust based on history\nStarting with learners’ experiences makes discussion of these issues immediate and real."]
["Type of Resource (e.g. report, video, website, checklist etc.)","Search Source","Source URL","Resource URL","Title","Organization(s) ","Free (Yes/No)","Targeted Cultural / Religious Group","Targeted Audience (e.g. patients, providers, carers, students, policy-makers)","Nature of Approach (e.g. culturally- specific, safe etc.)","Enablers for End-of-life Care","Barriers for End-of-life Care","Resource Details (includes description or summary)","Style (e.g. interactive web resource, best-practice guideline etc.)","Limitations and Challenges Identified by Resource","Limitations and Challenges of Resource","Key Messages / Recommendations","Additional information related to the overall scoping question"]
["Website","Google","http://www.mywhatever.com/","http://www.mywhatever.com/cifwriter/library/36/acc555.html","Culture and Bereavement Case Study","Access to End-of-Life Care","Yes","Hispanic","Providers","Culturally specific","NA","NA","Case studty about a Latino male with a two month history of headaches and dizziness who somatisized symptoms.","Short cae study - web based","NA","Limited information - did not address enablers for EOL care, did not address barriers - this was a case study but did not provide a debriefing section","Latinos tend to somatisize symptoms."]
["Type of Resource (e.g. report, video, website, checklist etc.)","Search Source","Source URL","Resource URL","Title","Organization(s) ","Free (Yes/No)","Targeted Cultural / Religious Group","Targeted Audience (e.g. patients, providers, carers, students, policy-makers)","Nature of Approach (e.g. culturally- specific, safe etc.)","Enablers for End-of-life Care","Barriers for End-of-life Care","Resource Details (includes description or summary)","Style (e.g. interactive web resource, best-practice guideline etc.)","Limitations and Challenges Identified by Resource","Limitations and Challenges of Resource","Key Messages / Recommendations","Additional information related to the overall scoping question"]
["Website","Google","http://www.mywhatever.com/","http://www.mywhatever.com/cifwriter/library/19/abcd630.html","Cultural Differences Last a Lifetime : Tailoring End-of-Life Care to A Diverse Population","Access to End-of-Life Care","Tes","Korean Americans, African Americans","Public, Providers","Culturally sensitive","Culturally derived and appropriate responses, ","Stereotypes\nFor Korean-Americans, family decision-making may be more highly valued than the individual’s expression of treatment preferences, while for African-Americans - with the notorious Tuskegee syphilis study still a fresh memory - there is a widespread mistrust of the health care system. As a result, they may be reluctant to sign any confusing legal form that they fear might sign away their rights. Differences such as these, Michel said, raise fundamental questions about current efforts to promote advance directives, and whether there might be other, more effective ways to achieve the same results.\n\nKagawa-Singer agreed, adding that the use of advance directives often doesn’t translate well across cultures, \"especially where the family - not the individual - is the smallest unit of care,\" and where views of autonomy and self-determination are seen through a more socio-centric, rather than egocentric cultural lens.\nMistrust of healthcare system","Short interview with a professor of UCLA's School of Public Health and Asian American Studies Centre about EOL care to diverse pppulations.","Webpage","Use of advance directives doesn't translate well across cultures.","Does not consider intersectional perspectives (gender, socioeconomic status in relation to culture and religion)","Culturally sensitive end-of-life care needs to pay attention to non-verbal communication, Kagawa-Singer said. It should recognize the alienation routinely imposed on the dying patient and his or her family by the hospital experience, the wide range of appropriate, culturally derived grief responses--even the ongoing role for the dead in the life of the community."]
["Type of Resource (e.g. report, video, website, checklist etc.)","Search Source","Source URL","Resource URL","Title","Organization(s) ","Free (Yes/No)","Targeted Cultural / Religious Group","Targeted Audience (e.g. patients, providers, carers, students, policy-makers)","Nature of Approach (e.g. culturally- specific, safe etc.)","Enablers for End-of-life Care","Barriers for End-of-life Care","Resource Details (includes description or summary)","Style (e.g. interactive web resource, best-practice guideline etc.)","Limitations and Challenges Identified by Resource","Limitations and Challenges of Resource","Key Messages / Recommendations","Additional information related to the overall scoping question"]
["Website","Google","http://www.mywhatever.com/","http://www.mywhatever.com/cifwriter/library/36/acc551.html"," Working with interpreters","Access to End-of-Life Care","Yes","Not identified - everyone","Providers","Culturally sensitive","Interpreters are usually bi-cultural as well as bilingual; they can be a source of information about the culture, customs and world view of the client.Encourage the interpreter to inform the practitioner of any cultural differences that may lead to misunderstandings or lack of compliance with the prescribed treatment. Respect the interpreter suggestions but do not allow him/her to take over.","NA","This article provides a short list of tips for providers when workign with medical interpreters.","Webpage","NA","This resource only discusses working with interpreters but does not address any other EOL care issues.","The following are tips for using medical interpreters:\nAvoid using family members as interpreters.\nAllow extra time for your visit, consult or counseling session.\nConfirm the issue of confidentiality with the interpreter and reassure the client.\nProvide the background context to the interpreter before you start the session.\nUse simple language and pause between sentences to give the interpreter an opportunity to translate every word.\nEmpower your client by giving him/her your undivided attention. Talk directly to the client, not the interpreter. Do not look back and forth from the interpreter to the client. Do not say \"please tell So & So such and such.\" The interpreter is just a voice who should translate all that is said. Avoid a three-way conversation.\nIf the client and interpreter start talking to each other, ask for a translation. Do not be left out.\nInterpreters are usually bi-cultural as well as bilingual; they can be a source of information about the culture, customs and world view of the client.Encourage the interpreter to inform the practitioner of any cultural differences that may lead to misunderstandings or lack of compliance with the prescribed treatment. Respect the interpreter suggestions but do not allow him/her to take over.\nIf possible encourage the same interpreter to continue working with the same client throughout the case.\nValidate the client's understanding by asking for brief summaries. Important ideas could be lost during the translation.\nWhile working with an interpreter, the practitioner's cultural sensitivity is in scrutiny and may make the practitioner nervous. Practice will bring acceptable comfort levels. Mutual respect between practitioners and interpreters is necessary for a successful intervention.\nKeep in mind that most interpreters also play the role of advocates. In the case of highly emotional situations the interpreter's assistance can be very helpful."]
["Type of Resource (e.g. report, video, website, checklist etc.)","Search Source","Source URL","Resource URL","Title","Organization(s) ","Free (Yes/No)","Targeted Cultural / Religious Group","Targeted Audience (e.g. patients, providers, carers, students, policy-makers)","Nature of Approach (e.g. culturally- specific, safe etc.)","Enablers for End-of-life Care","Barriers for End-of-life Care","Resource Details (includes description or summary)","Style (e.g. interactive web resource, best-practice guideline etc.)","Limitations and Challenges Identified by Resource","Limitations and Challenges of Resource","Key Messages / Recommendations","Additional information related to the overall scoping question"]
["Website","Google","http://www.mywhatever.com/","http://www.mywhatever.com/cifwriter/library/36/acc552.html","Cross-Cultural Communication in Health Care","Access to End-of-Life Care","Yes","Not identified - everyone","Provders","Culturally sensitive communication","Communication, building trust, asking questions","NA","This article provides a short list of tips and important factors to be considered during cross cultural communication between providers and patients.","Webpage","NA","This resource provides a short quick reference sheet for practioners in factors to be considered in cross cultural communication between health care providers and patients.  ","Some important factors to be considered in cross-cultural communication between health care providers and patients:\nA low context health care provider (hcp) should be sure his/her instructions are understood. The response of 'yes' does not necessarily mean that the patient understands what the hcp has said-- Instead, it may mean 'I heard you.' Health care providers can ask the patient to explain the instructions back to them.\nPatients from high context cultures may defer the authority of health providers and may be reluctant to questions the health care professional. Such patients may be reluctant to establish sustained eye contact with an individual perceived to be an authority figure, and to say \"no\" to avoid embarrassment.\nInformation empowers some; others believe it causes hope to be lost and may hasten death.\nAsk specific questions to the patient and family about their beliefs and practices concerning herbal medicines or alternative healing practices, privacy, modesty and physical touch.\nBuild a supportive, trusting relationship based on honesty and mutual respect.\nTo facilitate negotiation of cultural understanding in provider- patient relationships, listen to the patient's stories, solicit their illness narratives and explanatory models, and build partnerships."]
["Type of Resource (e.g. report, video, website, checklist etc.)","Search Source","Source URL","Resource URL","Title","Organization(s) ","Free (Yes/No)","Targeted Cultural / Religious Group","Targeted Audience (e.g. patients, providers, carers, students, policy-makers)","Nature of Approach (e.g. culturally- specific, safe etc.)","Enablers for End-of-life Care","Barriers for End-of-life Care","Resource Details (includes description or summary)","Style (e.g. interactive web resource, best-practice guideline etc.)","Limitations and Challenges Identified by Resource","Limitations and Challenges of Resource","Key Messages / Recommendations","Additional information related to the overall scoping question"]
["Website","Google","http://www.mywhatever.com/","http://www.mywhatever.com/cifwriter/library/36/acc553.html","Cultural Assessment in a Health Care Setting","Access to End-of-Life Care","Yes","Not identified - everyone","Providers","culturally-sensitive","Understand cultural factors that relate to the person's psychosocial environment, understand cultural elements between the patient and provider, understand cultural explanations of the individual illness through identifcation of key words or terms","NA","This checklist provides providers with a culturally sensitive assssment checklist in a healthcare setting.","Webpage","NA","This resource is very short and does not address socioeconomic or gender intersections.  ","ASSESSMENT ELEMENT #1: The cultural identity of the individual.\nhow the person identifies him/herself\nthe degree of acculturation\nhow close is the person to the native culture or to the host culture\nlanguage preferences\nASSESSMENT ELEMENT #2: The cultural factors relate to the person's psychosocial environment\nstressors in the local environment\nrole of religion\nsupport systems\nASSESSMENT ELEMENT #3: The cultural elements of the relationship between the individual and the health care provider (hcp) \ndifferences between the hcp and individual's culture and social status\nthe impact of these differences in communication and in negotiating an appropriate relationship\nASSESSMENT ELEMENT #4: Cultural explanations of the individual's illness\nidentify predominant idioms of distress through which a need for support is communicated (e.g. ataque de nervios, possessing spirits, nerves, mal de ojo)\nany local illness category used by the individual's family and/or community to identify the condition.\nindividual's explanatory model: In order for the care to be patient centered, no matter what the culture of the patient is, the practitioner has to elicit specific information from the patient to help the practitioner to organize the strategies for clinical care."]
["Type of Resource (e.g. report, video, website, checklist etc.)","Search Source","Source URL","Resource URL","Title","Organization(s) ","Free (Yes/No)","Targeted Cultural / Religious Group","Targeted Audience (e.g. patients, providers, carers, students, policy-makers)","Nature of Approach (e.g. culturally- specific, safe etc.)","Enablers for End-of-life Care","Barriers for End-of-life Care","Resource Details (includes description or summary)","Style (e.g. interactive web resource, best-practice guideline etc.)","Limitations and Challenges Identified by Resource","Limitations and Challenges of Resource","Key Messages / Recommendations","Additional information related to the overall scoping question"]
["Peer-reviewed research paper","Google","http://www.growthhouse.org","http://www.growthhouse.org/spirit/files/spiritual_care_consensus_report.pdf","Improving the Quality of Spiritual Care as a Dimension\nof Palliative Care: The Report of the Consensus Conference","JOURNAL OF PALLIATIVE MEDICINE","Yes","Spiritual","Health care professionals, physicians, nurses, social care workers & policy makers","Spiritually sensitive","(i) providers should be trained in doing a spiritual screening or history as part of their routine history and evaluation\n(ii) providers should be sensitive and vigiliant to recognize spiritual distress\n(iii) Screen and assess every patient’s spiritual symptoms, values, and beliefs and integrate them into the plan of care.\n(iv)All trained health care professionals should do spiritual screening and history-taking. These caregivers should also identify any spiritual diagnoses and develop a plan of care. Detailed assessment and complex diagnosis and treatment are the purview of the board-certified chap- lains working with the interprofessional team as the spiritual care experts.\n\n Health care settings should support and encourage the health care professional’s attention to self-care, reflec- tion, retreat, and attention to stress management.\na. The role of spirituality in the health care professional’s\nhealth, well-being, and resiliency to stress, as well as their ability to be compassionate, should be included in training and orientation for new staff members.\nb. Reflective processes should be integrated into regu- lar staff meetings and educational programs using rituals and care resources used for patients.\nc. Environmental aesthetics should encourage reflec- tion and foster self-nurturing behaviors.","(i) lack of awareness by providers\n(ii) appropriate communication / communication issues","A Consensus Conference sponsored by the Archstone Foundation of Long Beach, California, was held February 17–18, 2009, in Pasadena, California. The Conference was based on the belief that spiritual care is a fundamental component of quality palliative care. This document and the conference recommendations it includes builds upon prior literature, the National Consensus Project Guidelines, and the National Quality Forum Preferred Practices and Conference proceedings.\nThe goal of the Consensus Conference was to identify points of agreement about spirituality as it applies to health care and to make recommendations to advance the delivery of quality spiritual care in palliative care. Five literature-based categories of spiritual care (spiritual assessment, models of care and care plans, interprofessional team training, quality improvement, and personal and professional development) were identified and provided the framework for the Con- sensus Conference. The resulting document and conference recommendations builds upon prior literature, the NCP Guidelines21 and National Quality Forum (NQF) Preferred Practices22 and Conference proceedings. This article repre- sents the final Consensus Report. An expanded description of the Conference content and each section of this article is cur- rently in preparation and will be published as a book.","Online peer reviewed report","Incorporation of a full interprofessional team in the out- patient setting may present challenges. There are no generally accepted guidelines or practices for spiritual care in this arena.\nNevertheless, it is important to acknowledge that the existential quality of spiritual care makes quantification of outcomes a challenge. Assessing relief of suffering, forgiveness, meaning in life, and other abstract aspects of spiritual care require ap- proaches that exceed the capacity of the usual quantitative metrics applied to other aspects of health care. ","This resource does not address socioeconomic or gender intersections.  ","1. Spiritual care should be integral to any compassionate and patient-centered health care system model of care.\n2. Spiritual care models should be based on honoring the dignity of all people and on providing compassionate care.\n3. Spiritual distress or religious struggle should be treated with the same intent and urgency as treatment for pain\nor any other medical or social problem.\n4. Spirituality should be considered a patient vital sign.\nJust as pain is screened routinely, so should spiritual issues be a part of routine care. Institutional policies for\nspiritual history and screening must be integrated into\nintake policies and ongoing assessment of care.\n5. Spiritual care models should be interdisciplinary and clinical settings should have a Clinical Pastoral Education- trained board-certified chaplain as part of the interpro-\nfessional team."]
["Type of Resource (e.g. report, video, website, checklist etc.)","Search Source","Source URL","Resource URL","Title","Organization(s) ","Free (Yes/No)","Targeted Cultural / Religious Group","Targeted Audience (e.g. patients, providers, carers, students, policy-makers)","Nature of Approach (e.g. culturally- specific, safe etc.)","Enablers for End-of-life Care","Barriers for End-of-life Care","Resource Details (includes description or summary)","Style (e.g. interactive web resource, best-practice guideline etc.)","Limitations and Challenges Identified by Resource","Limitations and Challenges of Resource","Key Messages / Recommendations","Additional information related to the overall scoping question"]
["Website","Google","http://americanhospice.org/","http://americanhospice.org/learning-about-hospice/latino-families-and-hospice/","Latino Families and Hospice\n","American Hospice Foundation","Yes","Latino","Providers","culturally-sensitive, culturally specific","Famiy decision making, bilingual, bicultural community member who is aware of values of Latino community- such as secrecy and denial in EOL issues, as well as acknowledgement of important role of the family member in decision making\n\n This person should use wording that is sensitive (i.e., “future care” rather than “terminal care”) and should assess the family’s preferences for communication. Most importantly, this person can serve as the family’s advocate and a “sounding board” for questions along an unfamiliar journey.","(i) Latinos are less likely than whites to use hospices\n(ii) poor advance planning and complex family communications. For Latinos, there are additional complications such as lack of health insurance and language barriers with physicians and hospice staff. Apart from language and insurance coverage issues, whether or not Latino families choose hospice and how satisfied they are with hospice care, once enrolled, may be shaped by cultural differences. \n(iii) language barriers\n(iv) use of words such as \"terminal\" care versus \"future care\"","This article addresses EOL care issues and hospice care for Latinos.  It provides an overview of key issues experienced by the Latino community in terms of their likelihood to use hospices and their need for that type of EOL care serivces.  This article provides information to providers on ways to be cognizant and sensitive to cultural EOL issues for the Latino community.","Web resource about Latinos and hospices","few Latinos have had previous experience with hospice, and thus have little to no knowledge about hospice before it is needed. Of those who know about hospice, many have misconceptions that hospice is a place for poor, old people or for people with disabilities.\nFor example, compared to white patients, Latino patients may be under-treated for cancer pain,2-4 and Latino caregivers have more depression in bereavement.","Only focuses on Latinos and does not mention other groups\nDoes not include issues of intersectionality - gender or socioeconomic status"," In Latino families, control is kept within the family, and the patient is often “protected” from information and the responsibility of making decisions.\n\nCommonly, non-Latino hospice families receiving hospice care value information about what to expect in the last days, as it makes them more comfortable knowing what is going to happen and gives them time to call other relatives. In contrast, Latino families typically do not want to discuss the actual death, as articulated by the daughter of a hospice patient: “They gave me a pamphlet of what to expect. It explained all the steps my mother would go through until the day she would die. I did not want to read it. It was a plan or a guide I did not want to know or want to do. They told me I had to read it to be prepared. Even though it was practical advice about how to handle “the end,” I felt it was very drastic.”\nSuggestions for Practice\n\nWhen reaching out to Latinos, hospice providers are faced with a significant dilemma: how to discuss hospice with a patient and family who prefer not to discuss impending death. This dilemma can be solved by three approaches that address the “secrecy dilemma” and other cultural differences in end-of-life care.\n\nCommunity education should be designed to raise the level of knowledge about hospice within the Latino community.\nIt is helpful to use structured individual case assessment tools for learning communication preferences within the family. Case assessment tools list specific lines of questioning to identify family attributes, education levels, and preferences for communication.\nIn addition to intervening with providers and the community, each Latino family with a terminally ill member may need individual assistance negotiating hospice decisions and hospice care. This may be provided by a social worker, hospice staff, or volunteer from the Latino community.\nThe cultural sensitivity and diplomacy required for these tasks suggests the need for a trained bi-lingual, bi-cultural community member who is aware of the values of secrecy and denial, as well as the important role of the family in these decisions. This person should use wording that is sensitive (i.e., “future care” rather than “terminal care”) and should assess the family’s preferences for communication. Most importantly, this person can serve as the family’s advocate and a “sounding board” for questions along an unfamiliar journey."]
["Type of Resource (e.g. report, video, website, checklist etc.)","Search Source","Source URL","Resource URL","Title","Organization(s) ","Free (Yes/No)","Targeted Cultural / Religious Group","Targeted Audience (e.g. patients, providers, carers, students, policy-makers)","Nature of Approach (e.g. culturally- specific, safe etc.)","Enablers for End-of-life Care","Barriers for End-of-life Care","Resource Details (includes description or summary)","Style (e.g. interactive web resource, best-practice guideline etc.)","Limitations and Challenges Identified by Resource","Limitations and Challenges of Resource","Key Messages / Recommendations","Additional information related to the overall scoping question"]
["Website","Google","http://www.lienfoundation.org","http://www.lienfoundation.org/pdf/publications/Mortally%20Morbid%20Musings.pdf","On the Other Side","Lien Foundation","Yes","Chinese, Japanese, all cultural and religious groups","Providers, patients and their families, policy makers","Culturally sensitive and culturally specific","(i) understand that for many cultures, EOL care should be viewed through a holistic approach which supports not only the dying but their families by focusing on their quality of life, prioritising the treatment of the pain without neglecting the psychosocial and spiritual aspects\n(ii) human and compassionate approach to EOL care to families and patients by providers through the facilitation of EOL decisions.\n(iii) recognize that the EOL process is a life process as essential as other points of life such as marriage and ageing","The dying process is seldom seen or heard and many no longer know what to expect or how to behave - when confronted with death people usually feel awkward or avert the topic\nFear of death","This article describes the process of dying well and all the stigma attached to it.  It discusses the need to talk about death in a climate of honesty in order to normalize it.","Editorial online piece","Stigma, fear, aversion attached the death and EOL processes makes it difficult for EOL care decisions","Editorial piece, does not address intersectionality issues - gender or socioeconomic status.\n\nThe piece provides very general, high level insight and advice","The palliative care team of doctors, nurses and social workers takes the sting out of death by providing the family\nand caregiver with viable alternatives regarding medical treatment, nursing care and emotional support.\nDeath and EOL care should be understood as a natural process of life and should be \"normalized\" in conversatons - removed of fear and stigma."]
["Type of Resource (e.g. report, video, website, checklist etc.)","Search Source","Source URL","Resource URL","Title","Organization(s) ","Free (Yes/No)","Targeted Cultural / Religious Group","Targeted Audience (e.g. patients, providers, carers, students, policy-makers)","Nature of Approach (e.g. culturally- specific, safe etc.)","Enablers for End-of-life Care","Barriers for End-of-life Care","Resource Details (includes description or summary)","Style (e.g. interactive web resource, best-practice guideline etc.)","Limitations and Challenges Identified by Resource","Limitations and Challenges of Resource","Key Messages / Recommendations","Additional information related to the overall scoping question"]
["Website","Google","http://www.lienfoundation.org","http://www.lienfoundation.org/pdf/publications/living_with_the_end_in_mind.pdf","Living with the End in Mind\nA study of How to Increase the Quality of Death in Singapore","Lien Foundation","Yes","Singapore","Providers and policy makers","Culturally specific","The ultimate wish is to empower the personal wish of each individual, at the end of his or\nher life, to be cared for in the way they would like. They should have access to help to make informed decisions and enjoy the assurance that their wishes will be respected even as they receive professional and dignified treatment and assistance.\nAt the policy level, this calls for responsive and effective statutory provisions and comprehensive and empathetic public education. Government should support bottom- up initiatives by putting together a national strategy, facilitating measures proposed through legislation and policy decisions and lending its resources. The value of a national strategy was also a key finding of the Quality of Death global index released in 2010.\nAt the community level, quality care at the end of life is most desired, where the most glaring need is for sufficient and well-equipped hospice facilities that are adequately staffed by caring staff trained in palliative care.","Current hospices have challenges with staffing, have a waiting list and some are not easily accessible to people who use public transport and cannot easily afford taxi-rides. \nAnother challenge to filial piety will come from the growing desire to die in place. For some people, sending their ailing family members to a nursing home and leaving instructions for them to be sent to a hospital when their conditions\nget worse counts as “having done something for them.” But what really happens is that such cases end up with multiple medical investigations and active treatment without much real benefit and instead prolonging discomfort and the process of dying unnecessarily. This is where filial piety acts against the interests of the frail elderly.","This study, commissioned by the Lien Foundation in Singapore, places the spotlight squarely on a subject whose importance can only expand. The project’s ultimate end in\nmind is to achieve greater widespread public and professional awareness, and to garner support for all relevant ways to enhance the environment for quality palliative and end-of- life care, from the home to hospice and hospital systems, and everything else in between, that can help facilitate a good death, for a better life.","Online Report","Hospice and EOL care funding issues or lack of funding, lack of staffing to administer culturally appropriate EOL care\n\"Sandwhich generation\" - The “sandwich generation” was previously thought of as a typical working couple who must look after not only the next generation below (their children) but also the one above (their parents). With longer lifespans, more will have to look after not only their parents who may be aged over 60 but also their grandparents who may be over 80.","Does not address intersectionality issues - gender or socioeconomic inquality issues","Cultural attitudes towards death must be better understood and addressed. Hospices can be helped to become more sustainable both for inpatient and home care. More support can be given to community care facilities to enhance care in the neighbourhood, and to families to provide better end-of-life care at home. Individuals can be encouraged to readjust their outlook and priorities, and live life anew.\nKey messages include:\n(i) get the nation talking about EOL care\n(ii) revamp medical sector to include EOL needs - emotional and psychological well being of patients\n(iii) make EOL care available"]
["Type of Resource (e.g. report, video, website, checklist etc.)","Search Source","Source URL","Resource URL","Title","Organization(s) ","Free (Yes/No)","Targeted Cultural / Religious Group","Targeted Audience (e.g. patients, providers, carers, students, policy-makers)","Nature of Approach (e.g. culturally- specific, safe etc.)","Enablers for End-of-life Care","Barriers for End-of-life Care","Resource Details (includes description or summary)","Style (e.g. interactive web resource, best-practice guideline etc.)","Limitations and Challenges Identified by Resource","Limitations and Challenges of Resource","Key Messages / Recommendations","Additional information related to the overall scoping question"]
[null,null,"NOT FOUND\nThe requested URL /pdf/publications/What_Doctors_Say_About_Care_of_the_Dying_- _CHINESE.pdf was not found on this server.\n","http://www.lienfoundation.org/pdf/publications/What_Doctors_Say_About_Care_of_the_Dying_-%20_CHINESE.pdf",null,"Lien Foundation"]
["Type of Resource (e.g. report, video, website, checklist etc.)","Search Source","Source URL","Resource URL","Title","Organization(s) ","Free (Yes/No)","Targeted Cultural / Religious Group","Targeted Audience (e.g. patients, providers, carers, students, policy-makers)","Nature of Approach (e.g. culturally- specific, safe etc.)","Enablers for End-of-life Care","Barriers for End-of-life Care","Resource Details (includes description or summary)","Style (e.g. interactive web resource, best-practice guideline etc.)","Limitations and Challenges Identified by Resource","Limitations and Challenges of Resource","Key Messages / Recommendations","Additional information related to the overall scoping question"]
["Website","Google","http://www.lienfoundation.org","http://www.lienfoundation.org/pdf/publications/What_Doctors_Say_About_Care_of_the_Dying.pdf","What Doctors Say About Care of the Dying","Lien Foundation","Yes","Singapore","Policy makers, providers","culturally-sensitive, culturally specific","Patient's family, reliigous beliefs, how bad news is delivered","Difficulties with the current HC system in Singapore and financial issues that arise\nAnother consequence of the Singapore system is that there is often no healthcare professional that a patient has a longterm, trusting relationship with; unless, paradoxically, that patient has a chronic illness which requires specialist long-term care from doctors such as paediatricians,\ngeriatricians and rheumatologists, whom patients then develop more trusting relationships with.\nFinancial burden and care burden","This groundbreaking study addresses an issue of growing importance in Singapore’s aging population—medical care for the dying. It does so by providing real data from those actually delivering care to the dying, through interviews with Singaporean doctors practicing in a wide variety of situations. They discuss important issues such as what the “end of life” is and when it starts, the needs of patients’ families, the role of finances, when and how to cease treatment, and how the medical system in Singapore affects the medical care delivered. There is also a section on the law in Singapore in regard to the dying. Medical practitioners, policymakers, families caring for the chronically ill—all would benefit from reading and pondering this report.\n","Online Report","Financial challenges re: EOL care, communication issues\nDifficulties with moving from hospital care to home care\nDifficulties for families in affording care for chronic illness\n\nReality between clinical practise re: consent and confidentiality - information sharing between patient and families ","NA","Doctors in Singapore do not seem to have a very clear and settled notion of what constitutes the end of life as a phase. Nonetheless, they see their role as caring for their patients at the end of life even when cure is not possible. Doctors see themselves as having the responsibility for deciding when medical science is no longer going to help patients recover, responsibility for signalling when the goal of care should shift from recovery and cure to comfort and quality of life, and responsibility for guiding patients to accept the shift of goals and to prepare for the end of life. The cultural and religious beliefs of patients and their families as well as Singapore societal attitudes, however, do affect how well these tasks are achieved.\n\nIn Singapore, doctors find that they have to involve families in decision-making for most patients, particularly those who are elderly and legal minors, or otherwise dependent on their family for care. Families may expect to be consulted before any information is given to the patient, and often feel protective towards the patient, seeking to hide information or make decisions on the patient’s behalf. Doctors say that they have to work with families towards disclosing bad news and involving patients in decisions, and also that there are other factors that affect family decisions apart from consideration of what is best for the patient, such as the welfare of the family, finance\nand filial piety."]
["Type of Resource (e.g. report, video, website, checklist etc.)","Search Source","Source URL","Resource URL","Title","Organization(s) ","Free (Yes/No)","Targeted Cultural / Religious Group","Targeted Audience (e.g. patients, providers, carers, students, policy-makers)","Nature of Approach (e.g. culturally- specific, safe etc.)","Enablers for End-of-life Care","Barriers for End-of-life Care","Resource Details (includes description or summary)","Style (e.g. interactive web resource, best-practice guideline etc.)","Limitations and Challenges Identified by Resource","Limitations and Challenges of Resource","Key Messages / Recommendations","Additional information related to the overall scoping question"]
["Website","Google","http://www.lienfoundation.org","http://www.lienfoundation.org/pdf/publications/Emotional%20Will.pdf","My Emotional Will","Lien Foundation","Yes","Not identified","Patients","NA","NA","NA","A fillable \"emotional will\" where users fill in information about their fondest memories and thoughts before death.  This is intended to be given to a loved one after death.  It provides a personal message to loved ones.  This is part of the EOL ","Web resource - users can print it out","NA","NA","NA"]
["Type of Resource (e.g. report, video, website, checklist etc.)","Search Source","Source URL","Resource URL","Title","Organization(s) ","Free (Yes/No)","Targeted Cultural / Religious Group","Targeted Audience (e.g. patients, providers, carers, students, policy-makers)","Nature of Approach (e.g. culturally- specific, safe etc.)","Enablers for End-of-life Care","Barriers for End-of-life Care","Resource Details (includes description or summary)","Style (e.g. interactive web resource, best-practice guideline etc.)","Limitations and Challenges Identified by Resource","Limitations and Challenges of Resource","Key Messages / Recommendations","Additional information related to the overall scoping question"]
["Website","Google","http://www.lienfoundation.org","http://www.lienfoundation.org/pdf/publications/leaving_well.pdf","Living Well - Leaving Well","Lien Foundation","Yes","Singapore","Patients, families, the general public","culturally-sensitive, culturally specific","Family support, awareness, understanding and acknoweldgement of the isseu","Fear, stigma, shame, silence attached to death and EOL care","An online magazine that discusses death, EOL care and the process of dying.  This magazine is filled with personal accounts of patients and families who speak about the topic, attempting to dispel fear about death.","Online Magazine","An online magazine that discusses death, EOL care and the process of dying.  This magazine is filled with personal accounts of patients and families who speak about the topic, attempting to dispel fear about death.\nFinancial issues regarding EOL care and hospital care services during EOL","NA","Life should be celebrated before death and death is filled with silence and fears.\nSingapore's population is aging and death and EOL care is a topic that the nation needs to address.\n80% of those survey indicated they are not open to the idea of being in a hospice.\n1. Don't maintain a conspiracy of silence about death.  Accep that death is a natural process of life.\n2. Don't busy yourself fighting death.\n3. In cases where patients are unable to express their views, family members should assist.\n4. Seek help from EOL care services."]
["Type of Resource (e.g. report, video, website, checklist etc.)","Search Source","Source URL","Resource URL","Title","Organization(s) ","Free (Yes/No)","Targeted Cultural / Religious Group","Targeted Audience (e.g. patients, providers, carers, students, policy-makers)","Nature of Approach (e.g. culturally- specific, safe etc.)","Enablers for End-of-life Care","Barriers for End-of-life Care","Resource Details (includes description or summary)","Style (e.g. interactive web resource, best-practice guideline etc.)","Limitations and Challenges Identified by Resource","Limitations and Challenges of Resource","Key Messages / Recommendations","Additional information related to the overall scoping question"]
["Website","Google","http://www.lienfoundation.org","http://www.lienfoundation.org/pdf/publications/happy_coffins.pdf","Happy Coffins","Lien Foundation","Yes","Singapore","Patients","Awareness","NA","NA","The Happy Coffins initiative overturns the stigma of death and turns the coffin from a\nsymbol of fear, dread and grief, into a positive and life-affirming expression of art. It is part of the Lien Foundation’s Life Before Death campaign that advocates better care for\nthe dying. It also seeks to create die-logues about death and dying for greater awareness\non end-of-life matters. The campaign website can be accessed at www.lifebeforedeath.com.","Web Resource","NA","This resource does not address EOL issues, intsead it attempts to dispel the stigma around death and dying through a creative medium.","Instead of a symbol of fear and grief, coffins can be viewed positively - celebrating the person's life."]
["Type of Resource (e.g. report, video, website, checklist etc.)","Search Source","Source URL","Resource URL","Title","Organization(s) ","Free (Yes/No)","Targeted Cultural / Religious Group","Targeted Audience (e.g. patients, providers, carers, students, policy-makers)","Nature of Approach (e.g. culturally- specific, safe etc.)","Enablers for End-of-life Care","Barriers for End-of-life Care","Resource Details (includes description or summary)","Style (e.g. interactive web resource, best-practice guideline etc.)","Limitations and Challenges Identified by Resource","Limitations and Challenges of Resource","Key Messages / Recommendations","Additional information related to the overall scoping question"]
["Website","Google","http://www.lienfoundation.org","http://www.lienfoundation.org/pdf/publications/diary_of_a_caregiver.pdf","Life Before Death","Lien Foundation","Yes","Singapore","Patients, provders, carers, public","Culturally specific","Openly talking about dying and death offers opportunities to come to terms with the finiteness of life.\nAcknowledge feelings, concerns and anxieties instead of dismissing them\nKeeping the environment constant for patients","Conspiracy of silence about terminal illness, death, EOL care.  \nStigma attached to dealing with death and EOL care.\nInitiating a conversation about death and dying and our need to protect the loved one from harm and sorrow, our own fears and socio cultural beliefs, attitudes and taboos.  \n\n","This online booklet aims to lighten carers load by sharing the journey of a career, who wrote a blog about her feelings as she cared for her father during his last days in 2006-2007. This is to hopefully offer valuable insight to all.","Web Resource","Each person faces death in a unique and personal way, but they all need help.\nCarers often are haunted by feeligns of doubt or struggle with their feelings.","It is based on a blog/diary, therefore, it provides one outlook - a carer's perspective on death and EOL care","Caring for terminally ill can be a difficult and complex task.  The emotional needs of the cargiver can take a backseat.  It is important for careers to address and acknowledge their feelings and have time for themselves to recollect their thoughts and recharge.  Friends and relatives helping can also alleviate stress for caregivers.\nSome measures that can be taken at the EOL are: respect the needs of the person, feed only when the body needs it and when patient requests, serve food in small portions, let patient choose what they want to eat, when it doubt seek help"]
["Type of Resource (e.g. report, video, website, checklist etc.)","Search Source","Source URL","Resource URL","Title","Organization(s) ","Free (Yes/No)","Targeted Cultural / Religious Group","Targeted Audience (e.g. patients, providers, carers, students, policy-makers)","Nature of Approach (e.g. culturally- specific, safe etc.)","Enablers for End-of-life Care","Barriers for End-of-life Care","Resource Details (includes description or summary)","Style (e.g. interactive web resource, best-practice guideline etc.)","Limitations and Challenges Identified by Resource","Limitations and Challenges of Resource","Key Messages / Recommendations","Additional information related to the overall scoping question"]
["Video","Google","www.youtube.com","https://www.youtube.com/watch?v=9JG3qxqP1B4","Living Well With Cancer - A Chinese Canadian Perspective","Canadian Breast Cancer Foundation through a research project of Dr. Thomas","Yes","Chinese-Canadians","Families, patients, providers, careers","culturally-sensitive, culturally specific","Support of the family, community resources, increased awareness and understanding about issues relating to cancer and illnesses, interpreters, family members, counselling, responding effectively to having cancer by understanding the facts about cancer, understanding what your resources are, who can support you and be active by taking advantage of resources, talking with doctor, acknowledgement","Fear, stigma, shame, burdensome for the family, stress, lack of knowledge, lack of understanding, lack of communication, lanaguage barriers","Video interviews with Chinese-Canadian women with breast cancer who recall their experiences living with cancer and their journey to healing.  They share their experiences of feeling fear, shame and feeling like a burden to their families.\nThe ways in which Chinese and Canadians view cancer and illness is different - Chinese culture is more conservative.\nSocial dynamics in Chinese culture is also different and impacts how others in the community view the illness.","Youtube Video","Fear, shame, stigma, lack of awareness, gossip","Does not address intersectionality issues - gender or socioeconomic inquality issues","It is important to be aware of your health and acknowledge issues with your own health.  It is important for those who experience cancer to reach out and seek support - famiily, extended health, sick time, and not feel fear, shame or stigma.  There are resources available.\nProfessional providers should not only focus on the patients but also on the family members - this will help comfort the patient."]