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Palliative care for older South Asian migrants: A systematic review

Published online by Cambridge University Press:  08 July 2019

Jahan Shabnam Open the ORCID record for Jahan Shabnam [Opens in a new window] ,
Helle Timm ,
Dorthe S. Nielsen  and
Mette Raunkiaer
Jahan Shabnam*
Affiliation:
REHPA, The Danish Knowledge Centre for Rehabilitation and Palliative Care, Odense University Hospital and University of Southern Denmark, Denmark
Helle Timm
Affiliation:
REHPA, The Danish Knowledge Centre for Rehabilitation and Palliative Care, Odense University Hospital and University of Southern Denmark, Denmark
Dorthe S. Nielsen
Affiliation:
Migrant Health Clinic, Odense University Hospital: Center for Global Health, University of Southern Denmark and Health Sciences Research Center, University College Lillebaelt
Mette Raunkiaer
Affiliation:
REHPA, The Danish Knowledge Centre for Rehabilitation and Palliative Care, Odense University Hospital and University of Southern Denmark, Denmark
*
Author for correspondence: Jahan Shabnam, REHPA, The Danish Knowledge Centre for Rehabilitation and Palliative Care, Vestergade 17, 5800Nyborg, Denmark. Email: [email protected]
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Abstract

Objective

South Asian migrants have a higher burden of life-threatening diseases and chronic diseases compared to other ethnic groups. Yet, knowledge gaps remain around their palliative care needs in the host countries. The aim of the review was to present results from a systematic literature review of available international evidence on experiences with and perspectives on palliative care among older South Asian migrants, relatives, and healthcare providers.

Methods

A systematic review in accordance with PRISMA guidelines was conducted in February 2018, searching PubMed, CINAHL, PsychINFO, and EMBASE databases. PROSPERO #CRD42018093464. Studies included empirical research, providing international evidence on experiences and perspectives on palliative care of South Asian migrants and were published between 2000 and 2018. Thematic synthesis was used to analyze data.

Results

A total of 30 articles were included: qualitative (24), quantitative (5), and mixed methods (1). Three main themes were discovered: 1) palliative care practice within the family, 2) trust as a precondition of palliative care, and 3) the importance of knowledge and cultural competency. All the themes, to a greater or lesser extent, are related to access to and use of palliative care services by South Asian migrant families.

Significance of results

Involvement of family members in palliative care decision making could improve the satisfaction of South Asian migrant families toward the service. For example, Advanced Care Planning involving family members could be a possible way to engage family members in palliative care decision making. Supportive interventions, e.g. providing knowledge, aimed at patients and their family members might improve knowledge and increase awareness among South Asian migrant families of palliative care. Knowledge gained from this review could be implemented with other ethnic minority groups.

Keywords

Palliative careend-of-life caretransients and migrantsSouth Asianethnic groups
Type
Review Article
Information
Palliative & Supportive Care , Volume 18 , Issue 3 , June 2020 , pp. 346 - 358
Copyright
Copyright © Cambridge University Press 2019

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References

Ackroyd, R (2003) Audit of referrals to a hospital palliative care team: role of the bilingual health- care worker. Int J Palliat Nurs 9(8), 352–357.CrossRefGoogle ScholarPubMed
Akter, T, Dawson, A and Sibbritt, D (2017) What impact does antenatal and postnatal care have on neonatal deaths in low- and lower-middle-income countries? Evidence from Bangladesh. Health Care Women Int 38(8), 848–860.CrossRefGoogle ScholarPubMed
Biondo, PD, Kalia, R, Khan, RA, Asghar, N, Banerjee, C, Boulton, D, Simon, JE (2017) Understanding advance care planning within the South Asian community. Health Expect 20(5), 911–919. https://doi:10.1111/hex.12531CrossRefGoogle ScholarPubMed
Bowling, A, Iliffe, S, Kessel, A and Higginson, IJ (2010) Fear of dying in an ethnically diverse society: cross-sectional studies of people aged 65+ in Britain. Postgraduate Medical Journal 86(1014), 197–202.Google Scholar
Cain, CL, Surbone, A, Elk, R and Kagawa-Singer, M (2018) Culture and palliative care: preferences, communication, meaning, and mutual decision making. J Pain Symptom Manage 55(5), 1408–1419.CrossRefGoogle ScholarPubMed
Calanzani, N, Koffman, J and Higginson, IJ (2013) Palliative and end of life care for Black, Asian and Minority Ethnic groups in the UK. King's College London, Cicely Saunders Institute. https://www.mariecurie.org.uk/globalassets/media/documents/who-we are/diversity-and-inclusion-research/palliative-care-bame_full-report.pdfGoogle Scholar
Chattoo, S and Ahmad, WIU (2008) The moral economy of selfhood and caring: negotiating boundaries of personal care as embodied moral practice. Sociology of Health and Illness 30(4), 550–564.CrossRefGoogle ScholarPubMed
Coupland, VH, Madden, P, Jack, RH, Moller, H and Davies, EA (2011) Does place of death from cancer vary between ethnic groups in South East England? Palliat Med 25(4), 314–322. https://doi:10.1177/0269216310395986CrossRefGoogle ScholarPubMed
Cowan, MM (2014) The lived experiences of the Sikh population of South East England when caring for a dying relative at home. Int J Palliat Nurs 20(4), 179–186. https://doi:10.12968/ijpn.2014.20.4.179CrossRefGoogle Scholar
De Graaff, FM, Mistiaen, P, Devillé, WL and Francke, AL (2012) Perspectives on care and communication involving incurably ill Turkish and Moroccan patients, relatives and professionals: a systematic literature review. BMC Palliat Care 11(1), 17.CrossRefGoogle ScholarPubMed
Doorenbos, AZ (2003) Hospice access for Asian Indian immigrants. Journal of Hospice and Palliative Nursing 5(1), 27–33.CrossRefGoogle Scholar
Doorenbos, AZ and Nies, MA (2003) The use of advance directives in a population of Asian Indian Hindus. Journal of Transcultural Nursing 14(1), 17–24.CrossRefGoogle Scholar
Ebrahim, S, Bance, S and Bowman, KW (2011) Sikh perspectives towards death and end-of-life care. J Palliat Care 27(2), 170–174.CrossRefGoogle ScholarPubMed
Elo, S and Kyngäs, H (2008) The qualitative content analysis process. J Adv Nurs 62(1), 107–115.CrossRefGoogle ScholarPubMed
Evans, N, Menaca, A, Andrew, EV et al. (2012) Systematic review of the primary research on minority ethnic groups and end-of-life care from the United Kingdom. J Pain Symptom Manage 43(2), 261–286.CrossRefGoogle ScholarPubMed
Evans, N, Menaca, A, Koffman, J et al. (2012) Cultural competence in end-of-life care: terms, definitions, and conceptual models from the British literature. J Palliat Med 15(7), 812–820.CrossRefGoogle ScholarPubMed
Gupta, M, Brister, S and Verma, S (2006) Is South Asian ethnicity an independent cardiovascular risk factor? Canadian Journal of Cardiology 22(3), 193–197.CrossRefGoogle ScholarPubMed
Hawker, S, Payne, S, Kerr, C, Hardey, M and Powell, J (2002) Appraising the evidence: reviewing disparate data systematically. Qual Health Res 12(9), 1284–1299.CrossRefGoogle ScholarPubMed
Khalil, RB (2013) Attitudes, beliefs and perceptions regarding truth disclosure of cancer-related information in the Middle East: a review. Palliat Support Care 11(1), 69–78.CrossRefGoogle Scholar
Khosla, N, Washington, KT and Regunath, H (2016) Perspectives of health care providers on US South Asians' attitudes toward pain management at end of life. American Journal of Hospice and Palliative Medicine 33(9), 849–857.CrossRefGoogle ScholarPubMed
Khosla, N, Washington, KT, Shaunfield, S and Aslakson, R (2017) Communication challenges and strategies of US health professionals caring for seriously ill South Asian patients and their families. J Palliat Med 20(6), 611–617. https://doi:10.1089/jpm.2016.0167CrossRefGoogle Scholar
Kristiansen, M, Irshad, T, Worth, A, Bhopal, R, Lawton, J and Sheikh, A (2014) The practice of hope: a longitudinal, multi-perspective qualitative study among South Asian Sikhs and Muslims with life-limiting illness in Scotland. Ethn Health 19(1), 1–19.CrossRefGoogle ScholarPubMed
LeCroy, MN and Stevens, J (2017) Dietary intake and habits of South Asian immigrants living in Western countries. Nutrition reviews 75(6), 391–404.CrossRefGoogle ScholarPubMed
Markham, S, Islam, Z and Faull, C (2014) I never knew that! Why do people from Black and Asian Minority Ethnic groups in Leicester access hospice services less than other groups? A discussion with community groups. Diversity and Equality in Health and Care 11, 237–45.CrossRefGoogle Scholar
Morency, JD, Malenfant, EC and Maclsaac, S (2017) Immigration and diversity: Population projections for Canada and its regions, 2011 to 2036. Statistics Canada Catalogue no. 91-551-X. http://www.statcan.gc.ca/access_acces/alternative_alternatif.action?l=eng&loc=/pub/91-551-x/91-551-x2017001-eng.pdfGoogle Scholar
Morris, SM, King, C, Turner, M and Payne, S (2015) Family carers providing support to a person dying in the home setting: a narrative literature review. Palliat Med 29(6), 487–495.CrossRefGoogle ScholarPubMed
Nair, M and Prabhakaran, D (2012) Why do South Asians have high risk for CAD? Global Heart 7(4), 307–314.CrossRefGoogle ScholarPubMed
Nielsen, DS, Minet, L, Zeraig, L, Rasmussen, DN and Sodemann, M (2018) “Caught in a generation gap”: a generation perspective on refugees getting old in Denmark—a qualitative study. Journal of Transcultural Nursing 29(3), 265–273.CrossRefGoogle Scholar
Nielsen, DS, Minet, L, Zeraiq, L, Rasmussen, DN and Sodemann, M (2017) Older migrants in exile: the past holding hands with the present–a qualitative study. Scandinavian Journal of Caring Sciences 31(4), 1031–1038.CrossRefGoogle ScholarPubMed
Owens, A and Randhawa, G (2004) ‘It's different from my culture; they're very different’: providing community-based, ‘culturally competent’ palliative care for South Asian people in the UK. Health Soc Care Community 12(5), 414–421.CrossRefGoogle ScholarPubMed
Patel, N (1999) Black and minority ethnic elderly: perspectives on long-term care. In With respect to old age 1, 257–304. London: HMSO. http://www.priae.org/assets/1_PRIAE_Royal_Commission_on_Long_Term_Care_HMSO__Published_chp.pdfGoogle Scholar
Periyakoil, VS, Neri, E and Kraemer, H (2016) Patient-reported barriers to high-quality, end-of-life care: a multiethnic, multilingual, mixed-methods study. J Palliat Med 19(4), 373–379.CrossRefGoogle ScholarPubMed
Philips, L and Taylor, V (2012) Addressing the palliative care needs of minority groups. Primary Health Care 22(1), 26–30.CrossRefGoogle Scholar
Radbruch, L and Payne, S (2009) White paper on standards and norms for hospice and palliative care in Europe: part 1. European Journal of Palliative Care 16(6), 278–289.Google Scholar
Radbruch, L and Payne, S (2010) White paper on standards and norms for hospice and palliative care in Europe: part 2. European Journal of Palliative Care 17(1), 22–33.Google Scholar
Radhakrishnan, K, Saxena, S, Jillapalli, R, Jang, Y and Kim, M (2017) Barriers to and facilitators of South Asian Indian-Americans' engagement in advanced care planning behaviors. J Nurs Scholarsh 49(3), 294–302.CrossRefGoogle ScholarPubMed
Randhawa, G and Owens, A (2004) The meanings of cancer and perceptions of cancer services among South Asians in Luton, UK. British journal of cancer 91(1), 62.CrossRefGoogle ScholarPubMed
Randhawa, G, Owens, A, Fitches, R and Khan, Z (2003) Communication in the development of culturally competent palliative care services in the UK: a case study. Int J Palliat Nurs 9(1), 24–31. https://doi:10.12968/ijpn.2003.9.1.11042CrossRefGoogle ScholarPubMed
Salant, T and Lauderdale, DS (2003) Measuring culture: a critical review of acculturation and health in Asian immigrant populations. Social Science and Medicine 57(1), 71–90.CrossRefGoogle ScholarPubMed
Sepúlveda, C, Marlin, A, Yoshida, T and Ullrich, A (2002) Palliative care: the World Health Organization's global perspective. J Pain Symptom Manage 24(2), 91–96.CrossRefGoogle ScholarPubMed
Shanmugasundaram, S (2014) Knowledge of palliative care: an Indian's perspective. Nursing and Health 2(5), 100–105.Google Scholar
Shanmugasundaram, S (2015) Unmet needs of the Indian family members of terminally ill patients receiving palliative care services. Journal of Hospice and Palliative Nursing 17(6), 536–543. https://doi:10.1097/NJH.0000000000000195CrossRefGoogle Scholar
Shanmugasundaram, S and O'Connor, M (2009) Palliative care services for Indian migrants in Australia: experiences of the family of terminally ill patients. Indian J Palliat Care 15(1), 76–83. https://doi:10.4103/0973-1075.53589CrossRefGoogle ScholarPubMed
Sharma, RK, Khosla, N, Tulsky, JA and Carrese, JA (2012) Traditional expectations versus US realities: first- and second-generation Asian Indian perspectives on end-of-life care. J Gen Intern Med 27(3), 311–317.CrossRefGoogle ScholarPubMed
Somerville, J (2001) Palliative care: the experience of informal carers within the Bangladeshi community. Int J Palliat Nurs 7(5), 240–247.CrossRefGoogle ScholarPubMed
SAALT (2012) A demographic snapshot of South Asians in the United States. (2012) Available at http://saalt.org/wp-content/uploads/2012/09/Demographic-Snapshot-Asian-American-Foundation-2012.pdfGoogle Scholar
Tiwari, SK and Wang, J (2008) Ethnic differences in mental health service use among White, Chinese, South Asian and South East Asian populations living in Canada. Soc Psychiatry Psychiatr Epidemiol 43(11), 866.CrossRefGoogle Scholar
Venkatasalu, MR (2017) Let him not be alone: perspectives of older British South Asian minority ethnic patients on dying in acute hospitals. Int J Palliat Nurs 23(9), 432–439. https://doi:10.12968/ijpn.2017.23.9.432CrossRefGoogle Scholar
Venkatasalu, MR, Arthur, and Seymour, J (2013) Talking about end-of-life care: the perspectives of older South Asians living in East London. Journal of Research in Nursing 18(5), 394–406.CrossRefGoogle Scholar
Venkatasalu, MR, Seymour, JE and Arthur, A (2014) Dying at home: a qualitative study of the perspectives of older South Asians living in the United Kingdom. Palliat Med 28(3), 264–272.CrossRefGoogle ScholarPubMed
Weerasinghe, S and Maddalena, V (2016) Negotiation, mediation and communication between cultures: end-of-life care for South Asian immigrants in Canada from the perspective of family caregivers. Soc Work Public Health 31(7), 665–677.CrossRefGoogle ScholarPubMed
Wilkinson, E, Randhawa, G, Brown, E et al. (2016) Exploring access to end of life care for ethnic minorities with end-stage kidney disease through recruitment in action research. BMC Palliat Care 15(1) (no pagination)(57).CrossRefGoogle ScholarPubMed
Wilkinson, E, Randhawa, G, Brown, E et al. (2017) Time, timing, talking and training: findings from an exploratory action research study to improve quality of end of life care for minority ethnic kidney patients. Clin Kidney J 10(3), 419–424. https://doi:10.1093/ckj/sfw151CrossRefGoogle ScholarPubMed
Wilkinson, E, Randhawa, G, Brown, EA et al. (2014) Communication as care at end of life: an emerging issue from an exploratory action research study of renal end-of-life care for ethnic minorities in the UK. J Ren Care 40, 23–29.CrossRefGoogle ScholarPubMed
Wilkinson, E, Waqar, M, Gill, B et al. (2017) Exploring end-of-life care for South Asian kidney patients: interviewer reflections. Int J Palliat Nurs 23(3), 120–128. https://doi:10.12968/ijpn.2017.23.3.120CrossRefGoogle ScholarPubMed
Worth, A, Irshad, T, Bhopal, R 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 338(7693), 1–19.CrossRefGoogle ScholarPubMed