Table 2 Data extraction table

Bellamy and Gott, (2013) [32] What are the priorities for developing culturally appropriate palliative and end-of -life care for older people? The views of healthcare staff working in New Zealand.

New Zealand.

To explore the views and experiences of care staff regarding the provision of palliative and end-of-life care for Maori, Pacific Island and Asian, particularly Chinese, elders

Qualitative approach, based on grounded theory.

10 focus groups, 2 joint interviews.

14 doctors, 49 nurses, 17 other health professionals.

Specialist palliative care teams, hospice, and community.

Residential aged care facilities.

GP practices.

Hospital based teams.

Home preferred place of care, preference for family carers.

Need for support/education of family to facilitate such care.

Importance of institutional settings being able to accommodate large family groups

Communication challenges: language and disclosure preferences, individual vs. collective decision-making

Acknowledgement of heterogeneity within groups and importance of individual assessment.

8/10

80%

Debesay et al., (2014) [33] Facing diversity under institutional constraints: challenging situations for community nurses when providing care to ethnic minority patients.

Norway.

To understand the challenges encountered by community nurses while providing home health care to ethnic minority patients in Norway.

Qualitative – based on a hermeneutics approach.

In-depth interviews.

19 community nurses

Home health care nursing teams.

Uncertainty/fear of causing offence when providing personal care.

Discomfort/uneasiness caused by lack of familiarity with patients’ cultural norms.

Challenges posed by perceived reluctance to talk about dying, nurses concerned especially when young children involved.

Conflict between fulfilling own clinical role and respecting wishes of patient and/or family.

Lack of institutional support in adapting services/supports to meet needs of minority patients, little time, lack of support for staff to develop expertise/share knowledge.

9/10

90%

de Graaff et al., (2012a) [34] Talking in triads: communication with Turkish and Moroccan immigrants in the palliative phase of cancer.

The Netherlands.

To gain insight into the factors that influence communication between health professionals and Turkish and Moroccan immigrants in the palliative phase of cancer

Qualitative.

Semi-structured in-depth interviews.

33 cases of patients with incurable cancer of Moroccan or Turkish descent.

6 patients, 30 relatives, 47 care providers.

Various community sites and hospitals.

Multilingual triads featuring care provider, patient and relative.

Little use of professional interpreters based on patient and family preference and perception that engaging interpreters is time-consuming.

Concerns and differing opinions over what information is conveyed to patient by family.

Difficulty determining wishes of patient and those of family members.

Some subjects not broached by family or care providers due to communication challenges e.g., financial/family pressures, clarity on cessation of curative treatment.

Varying response to conflict by care providers, some blamed family, some adjusted own communication strategies to align with patients/family and provided extra time, some acknowledged differences but proceeded as per own opinions and some sought middle ground in conjunction with family.

Some communication scenarios similar to native Dutch family groups at end of life, however, care providers voiced they were more familiar with these situations so more comfortable dealing with them.

9/10

90%

de Graaff et al., (2012b) [35] Understanding and improving communication and decision-making in palliative care for Turkish and Moroccan immigrants; a multi perspective study.

The Netherlands

To explore how communication and decision-making in palliative care amongst Turkish and Moroccan patients are influenced by different styles of care management between Turkish and Moroccan families and Dutch professional care providers

Qualitative.

Semi-structured in-depth interviews.

33 cases of patients with incurable cancer of Moroccan or Turkish descent.

6 patients, 30 relatives, 47 care providers.

Various community sites and hospitals.

Concept of ‘care management group’ used as key analytic tool to explore communication and decision-making.

Quality of life emphasised by care professionals’ pursuit of cure emphasised by families.

Role of family in ‘care management group’ not always adequately recognised.

Communication and decision-making hampered by issues within and between patient and family members and members of the care provider teams.

Some communication difficulties within family and within care teams not culture related but common to many groups.

Some examples of communication between all parties which prove satisfactory to all.

9/10

90%

de Voogd et al., (2021) [36] Health care staff’s strategies to preserve dignity of migrant patients in the palliative phase and their families: A qualitative study.

The Netherlands.

To gain insight into registered nurses’ and care assistants, difficulties, and strategies for preserving dignity in the last phase of life and their families.

Qualitative approach.

5 face to face focus groups with care staff.

1focus group with key informants.

29 care staff, 18 care assistants, 7 nurses, 2 social workers, 2 team leaders.

6 key figures with cultural mediation functions.

Various Dutch nursing homes, 1 Dutch hospital.

Communication challenges with family involved differing opinion around decision-making, perceived family misconceptions about care or disease.

Language barriers made eliciting patient preferences difficult and hampered development of relationships.

Little use of interpreters in nursing homes settings.

Ineffective/harmful strategies identified as eliciting patient’s wishes in private, attempting to change perspectives.

Adapted language and explored religious/cultural matters with families.

Some challenges also common to non-migrant Dutch population.

Key respondents note use of religion/culture as explanation by migrant patients or families may mask other issues.

8/10

80%

Eckemoff et al., (2018) [37] End of life care for older Russian immigrants-perspectives of Russian immigrants and hospice staff,

United States.

To gain insight into the views of older Russian immigrants, the adult children of older Russian immigrants and hospice care providers on end-of-life care.

Qualitative approach.

Individual in-depth interviews.

4 Russian seniors, 5 Russian adult children, 4 hospice staff, 1 facility director, 1 nurse, 2 social workers.

Care for diverse patients seen as challenging.

Training provided yearly to staff.

Preference amongst older patients for care at home.

Differing opinions between patients/families and staff on patient autonomy and decision-making.

Differing views on use of non-family interpreters.

Lack of understanding and information amongst patients and families regarding health services.

7/10

70%

Green et al., (2018) [38] ‘Death is difficult in any language’:a qualitative study of palliative care professionals’ experiences when providing end-of -life care to patients from culturally and linguistically diverse backgrounds,

Australia

To elicit the experiences of palliative care health professionals when providing care for patients from CALD backgrounds which differ from mainstream Australian language and culture.

Emergent qualitative study, informed by grounded theory.

4 focus groups, 28 staff, 2 groups palliative care ward nursing staff.

1 group multidisciplinary community palliative care team.

1 group allied health team palliative care ward, 1 specialist care unit, 1 community palliative care service based at a hospital.

Death is difficult in any language.

Need for individual assessment of communication preferences and needs of patient and family.

Language barriers can impede communication.

Use of interpreters infrequent, use of family interpreters challenging at times.

Recognition of broader social and cultural factors which may influence care e.g., migration history, trauma, discrimination.

Negotiation involved in addressing patient care needs with family involvement.

Experience both challenging and satisfying for staff members.

10/10

100%

Henry and Timmins, (2016) [39] An exploration of specialised palliative care nurses’ experiences of providing care to hospice inpatients from minority ethnic groups- implications for religious and spiritual care.

Ireland.

To gain an understanding of nurse’ experience of providing care to patients from minority ethnic groups within the specialist palliative care inpatient unit of an Irish hospice.

Qualitative hermeneutic phenomenology.

Unstructured interviews.

5 nurses, each interviewed twice.

1 palliative care in-patient unit.

Facilitation of rituals of death and dying important part of nurse’s role.

Lack of experience/familiarity source of uncertainty.

Need to manage impact of large families on other patients.

Conflict between clinical priorities e.g., analgesia and family beliefs.

Importance of ‘proceeding slowly’ with acceptance of differing beliefs.

Nurses perceived need for further education.

9/10

90%

Johnstone et al., (2016a) [40] Nursing roles and strategies in end-of-life decision making concerning elderly immigrants admitted to acute care hospitals.

Australia

To gain insight into nurses understanding of culturally responsive end-of-life care, decision-making and quality of death for older immigrants.

Qualitative exploratory descriptive study.

In-depth, semi-structured interviews, face-to-face or telephone.

22 registered nurses.

4 acute hospitals, medical-surgical, palliative care, aged care.

Initially nurses felt ill prepared, learnt ‘on the job’, from experienced colleagues.

Lack of formal education, self-educated, an on-going process.

Important role of nurses in assisting patient and family to face death.

Recognition of heterogeneity within groups.

Language barriers an impediment to communication.

Important role of family in striving towards a good death, importance of building relationships.

Importance of nurses’ role as advocate for patient and family.

9/10

90%

Johnstone et al., (2016b) [41] Assuaging death anxiety in older oversees-born Australians of culturally and linguistically diverse backgrounds hospitalised for end-of-life care.

Australia

To describe and report the strategies nurses use to identify and help assuage the terror of death and related anxieties perceived in older immigrant patients and their families.

Qualitative exploratory descriptive study.

In-depth, semi-structured interviews.

Face –to-face: 13, telephone: 9.

22 registered nurses.

4 acute hospitals, medical-surgical, palliative care, aged care.

Participants identified components to death anxiety: fear of the unknown, fear of not having lived a meaningful life, fear of leaving behind loved ones.

Importance of presence, ongoing explanations, and recognition of cultural influences, such as collective decision making, on family responses.

Findings emphasised cultural similarities rather than differences in fear of death.

9/10

90%

Johnstone et al., (2016c) [42] Nursing strategies for engaging families of older immigrants hospitalized for end-of-life care: An Australian study.

Australia.

To explore and describe the strategies nurses use to facilitate engagement with families of older immigrant patients from non-English-speaking backgrounds (NESB) hospitalised for EOL care.

Qualitative descriptive study.

In-depth, semi-structured interviews.

22 registered nurses.

4 acute hospitals, medical-surgical, palliative care, aged care.

Nurses believed they had an essential role in engaging the families of older NESB families.

Strategies used common to quality professional-family relationships irrespective of cultural background.

Nurses recognised that challenging behaviour was often stress related and actively strove to ensure families were not labelled.

Recognition that migration factors could influence interaction e.g., intergenerational difference/conflicting beliefs.

Nurses recognised and emphasised the importance of including family members in care.

Nurses demonstrated a ‘will to engage’ with families, also demonstrated willingness to engage with cultural difference.

‘Right attitude’ needed in addition to knowledge and skill to build and sustain good relationships between nurses and families.

6/10

60%

Johnstone et al., (2018) [43] Fostering trusting relationships with older immigrants hospitalised for end-of-life care.

Australia.

To explore and describe the specific processes that nurses use to foster trust and overcome possible mistrust when caring for older immigrants of non-English speaking backgrounds hospitalised for end-of-life care.

Qualitative exploratory descriptive study.

In-depth, semi-structured interviews.

22 registered nurses.

4 acute hospitals, medical-surgical, palliative care, aged care.

Recognition by nurses of importance of trust in all cultures.

With older non-English speaking backgrounds (NESB) patients, particular importance of trust with potential differing attitudes to analgesia and conversations about diagnosis, and prognosis, death and dying was recognised.

Nurses’ commitment to fostering trust demonstrated by care strategies that were ‘intentional, conscious, and conscientious.

Strategies applicable to all patients at end-of-life (EOL).

9/10

90%

Khosla et al., (2016) [44] Perspectives of health care providers on US South Asians attitudes towards pain management at end of life.

United States

To explore the attitudes and influences of US South Asians to pain management at end-of-life.

Multi-method qualitative descriptive study.

4 focus groups, 35 participants, 23 individual interviews.

57 participants -nurses -physicians - physician assistant -nurse administrators -chaplains -medical social workers.

1 large university-owned health system, 1 large non-profit healthcare organisations, community-based hospices.

General reluctance to take pain medication, participants caution against stereotyping but agree high prevalence.

Some factors related to healthcare practices and beliefs in country-of-origin e.g., minimalistic attitude towards medication in general, limited access to pain medications in countries of origin.

Strength of spiritual beliefs may influence decisions.

Many patient and family concerns about medication (addiction, side effects, stoicism) very similar to those of general US population.

9/10

90%

Khosla et al., (2017) [45] Communication challenges and strategies of US health professionals caring for seriously ill South Asian patients and their families.

USA

To explore the challenges faced by healthcare providers caring for seriously ill South Asians and their families.

To explore strategies to address these challenges.

Multi-method qualitative descriptive study.

4 focus groups, 35 participants, 23 individual interviews.

57 participants -nurses -physicians - physician assistant -nurse administrators -chaplains -medical social workers.

1 large university-owned health system, 1 large non-profit healthcare organisations, community-based hospices.

Challenges identified- language barriers, HCP preference for professional interpreters sometimes resisted by families, difficulties with information modification when family interpret, telephone interpreters missing non-verbal cues.

Difficulty identifying spokesperson in large family groups.

Family wish to withhold information from patient caused disquiet among HCP.

Passive communication style i.e., reluctance to explicitly state wishes identified among some patients and families.

Some HCP’s felt South Asians culturally inexperienced in direct communication.

Preference among some patients/families for specific gender of HCP identified.

Potential benefit from use of cultural mediators identified.

7/10

70%

Khosla et al., (2019) [46] Health-care providers’ perspectives on decision-making among seriously ill patients on South Asian origin in the United States.

USA

To better understand health-care providers’ perspectives on decision-making among seriously ill persons of South Asian origin.

Multi-method qualitative descriptive study.

4 focus groups, 35 participants, 23 individual interviews.

57 participants -nurses -physicians - physician assistant -nurse administrators -chaplains -medical social workers.

1 large university-owned health system, 1 large non-profit healthcare organisations, community-based hospices.

Acculturation and higher education levels resulted in increases participation in decision making by patients.

Preference for physician- directed decision-making amongst some patients and families.

Spiritual beliefs may be strongly influential on decisions re analgesia etc., involvement of spiritual leaders may be helpful.

Family decision-making is a cultural norm, difficulties clarifying patient wishes, challenges for providers balancing US norms.

Distribution of decision-making responsibilities can be complex- spokesperson may not always be decision-maker.

South Asian patients and families may lack information or hold negative views of palliative options like other immigrant groups.

8/10

80%

Mahilall, R, and Swartz, L. (2021) [47] Spiritual care practices in the Western Cape, South Africa: the challenge of diversity.

South Africa

To understand what spiritual care practices, exist in hospices in the Western cape, against the backdrop of multifaceted diversities.

Qualitative study.

2 focus groups.

23 participants- nurses, social workers, spiritual care workers, managers.

11 hospices.

Need for staff to have broad knowledge of differing religions, emphasis on non-judgemental approach, sensitivity and self-awareness.

Respect for traditional spiritual practices and bereavement rites important.

Awareness that patient’s spiritual needs may not align with patients’ own cultural or religious background.

Team approach important.

Resources- time, adequate staff.

6/10

60%

Milberg et al., (2016) [48] Health care professionals’ understandings of cross-cultural interaction in end-of- life care: a focus group study.

Sweden

To explore end -of-life care providers’ understandings of patients with a migrant background.

Qualitative study.

Focus groups.

60 MDT members, nursing, nursing assistants, medical, occupational therapy.

11 care settings, medicine/surgery/geriatrics/ specialised palliative home care/primary care.

Despite limited experience, anticipated cross-cultural interaction would be challenging.

Feelings of uncertainty and stress when dealing with unfamiliar situations.

Concerns about facing ethical dilemmas, language/communication difficulties with both patients and families.

Expecting misunderstandings/worrying about unmet needs.

Perceived lack of knowledge about other cultures.

8/10

80%

Neiman, (2019) [49] Nurses’ perceptions of basic palliative care in the Hmong population.

USA

To describe basic palliative care from the acute nurses’ perspective with consideration for culturally diverse populations.

Qualitative theory generating study.

7 focus groups, 8 individual semi-structured interviews.

34 registered nurses.

3 acute hospitals, non-ICU/ED settings.

Importance in accommodating rituals/ accommodating cultural expression to ensure relationship with palliative care service is maintained.

Importance of family involvement.

Managing language barriers, concerns re quality of interpreter services and incomplete understanding/ reluctance of family to seek clarification.

Perceived lack of specific cultural knowledge.

8/10

80%

Nielsen et al., (2013) [50] Maintaining distance from necessary intrusion: A postcolonial perspective on dying at home for Chinese immigrants in Toronto, Canada.

Canada

To describe and examine how meanings of home condition negotiations of care for first generation Chinese immigrants with advanced cancer receiving palliative home care, family caregivers and home care providers.

Qualitative focused ethnographic study.

In-depth individual interviews.

Observation during home visits.

4 patients, 4 family caregivers.

3 home visiting nurses, 11 key informants.

Community homecare organisations, palliative care centre.

Specialised knowledge of care providers resulted in subtle power imbalance.

Nurses viewed education and preparation for dying as part of their role.

Issues such as precarious employment of family members and lack of knowledge of services/benefits available reported.

Dying at home involves complex emotional and physical adjustments and findings not ethno-specific.

Need for health care providers to consider own cultural assumptions.

10/10

100%

Nielsen et al., (2015) [51] Patient-cantered care or cultural competence: negotiating palliative care at home for Chinese Canadian immigrants.

Canada.

To describe and examine how meanings of home condition negotiations of care for first generation Chinese immigrants with advanced cancer receiving palliative home care, family caregivers and home care providers.

Qualitative focused ethnographic study.

In-depth individual interviews.

Observation during home visits.

4 patients, 4 family caregivers.

3 home visiting nurses, 11 key informants.

Community homecare organisations, palliative care centre.

Perceptions of death as a taboo topic vary amongst patients and families.

Perceptions of death as a taboo topic vary amongst healthcare providers.

Possible cultural taboos such as not wanting to die at home found to have other explanations.

The shared experience of dying supersedes culture, race, and religion.

Language barriers an additional complication.

Attempts to ‘match’ staff with patients based on language or culture needs to be carefully considered.

5/10

50%

Roider-Schur et al., (2019) [52] Migrate your mind: the role of palliative care in palliative cancer treatment.

Austria

To gain insights into practical aspects of palliative care in the clinical encounter with terminally ill cancer patients with migrant backgrounds and their relatives.

Qualitative study.

Semi-structured interviews.

21 MDT members, medical, nursing, social work, psychology, spiritual care.

1 site providing cancer care, OPD, oncology day ward, oncology ward, palliative care ward and radiation oncology.

Identified means by which palliative care might meet the needs of migrant patients and their families.

Structural conditions including high staff ratio, more spacious accommodation, possibility of longer admissions, extended visiting hours.

Personnel structures including greater emphasis on interdisciplinary teamwork, voluntary workers, greater availability of social workers and psychological support, greater clinical autonomy for nurses.

Treatment intentions, different attitudes to EOL care, unconditional acceptance of subjective symptoms, focus on needs apart from illness, traditions/rituals etc., emphasis on EOL conversations, support for relatives.

Identified staff characteristics, close relationships with patients, knowledge of rituals surrounding death and dying, willingness to ‘bend rules’, shield patients from overwhelming family members.

9/10

90%

Schrank et al., (2017) [53] Pushing boundaries-culture sensitive care in oncology and palliative care: a qualitative study.

Austria

To understand how staff in multi professional health care teams in cancer care experience working with patients with different cultural backgrounds.

Qualitative study.

Semi-structured interviews.

21 MDT members, medical, nursing, social work, psychology, spiritual care.

1 site providing cancer care, OPD, oncology day ward, oncology ward, palliative care ward and radiation oncology.

Culture-specific differences: large families, differing views on information sharing and EOL communication to general population, language barriers hindering communication, differing views on use of alternative treatment, more vocal expressions of emotion, little reporting of psychological symptoms, specific rituals/traditions around death.

Reasons for differences: experience in home country/ socio-demographics/ isolation from wider Austrian society.

Staff report sense of satisfaction and motivation when relationships are positive, also uncertainty and anxiety.

Challenges include accommodating large families, communication difficulties due to language/interpreter issues, variable accommodations by staff causing tension.

Tools for culture-sensitive care: organisational measures/ team-level measures/personal tools.

8/10

80%

Shahid et al., (2013) [54] Improving palliative care outcomes for Aboriginal Australians: service providers’ perspectives.

Australia.

To explore care providers’ experiences and concerns in providing palliative care for Aboriginal people and to identify opportunities for overcoming gaps in understanding between them and Aboriginal patients and families.

Exploratory qualitative study.

In-depth face-to-face or telephone interviews.

15 palliative healthcare providers.

Hospital and home-based palliative care services.

Low uptake of palliative care services by Aboriginal people, lack of knowledge/understanding of palliative care and late referral are contributors.

Historic mistrust of services, poverty, poor housing, remote locations with limited services influence engagement.

Services offered not always acceptable to Aboriginal people.

Challenges identified by providers include -communicating about death and dying -anger around death -family conflict over choices -family caregiving at EOL.

Heterogeneity amongst Aboriginal communities and families noted.

Discomfort /uncertainty accommodating rituals at end of life voiced by providers.

8/10

80%

Torres et al., (2016) [55] The ‘other’ in end-of-life care: providers’ understandings of patients with migrant backgrounds.

Sweden.

To explore the understandings that end-of-life care providers articulate when they talk about challenges associated with cross-cultural interaction involving patients with migrant backgrounds.

Qualitative study.

Focus groups.

60 MDT members, nursing, nursing assistants, medical, occupational therapy.

11 care settings, medicine/surgery/geriatrics/ specialised palliative home care/primary care.

Anticipating cross-cultural interaction to be challenging, assumption that ‘difference’ is challenging.

Stereotypical views about migrant families but also about Swedish families.

Expecting to encounter difficulty accommodating large families, concerns around physical space.

Concerns about difficulty establishing relationships and communicating due to language barriers resulting in not being able to talk to patients about dying.

Concerns around disclosure, Swedish laws.

Respondents assumed ethno-cultural difference rendered patient-centred and culturally competent EOL care impossible.

9/10

90%

Vincent et al., (2019) [56] Provision of comprehensive culturally competent palliative care in the Qikiqtaaluk region of Nunavut.

Canada

To explore health care providers perspectives on the provision of palliative care in the Qikiqtaaluk region of Nunavut, further examining their understanding of and experiences with providing palliative care services to Indigenous patients.

Qualitative exploratory study based on a constructivist paradigm.

In-depth interviews, face-to-face or telephone.

7 physicians, 6 nurses.

Small local acute care unit, community services.

Respecting Inuit culture, EOL planning and role of family.

Recognising ‘sense of home’.

Being aware of limited resources.

Recognising role of medical interpreters.

Improving quality of palliative care programme.

8/10

80%

Washington, K.T., Khosla, N. and Lero, C. (2019) [57] U.S. providers’ perceptions of the psychosocial needs of seriously ill patients of South Asian origin: implications for health social work.

USA

To explore health care providers’ perceptions of the psychosocial needs of seriously ill patients of South Asian origin in the US.

Multi-method qualitative descriptive study.

4 focus groups, 35 participants, 23 individual interviews.

57 participants -nurses -physicians - physician assistant - nurse administrators – chaplains - medical social workers.

1 large university-owned health system, 1 large non-profit healthcare organisations, community-based hospices.

Patients faced financial and legal challenges; some immigration related.

Perceived preference for family-based care and decision making, non-intrusion by care providers.

Reluctance among family members to discuss emotional or psychological pain.

Care providers attributed psychological problems to culturally incongruent care rather than patient or family related.

Acculturation can cause differing opinions within families.

Preference for support from within South Asian community rather that via health care system.

6/10

60%