Skip to main content Accessibility help
×
×
Home

Indigenous people's experiences at the end of life

  • Wendy Duggleby (a1), Samantha Kuchera (a1), Rod MacLeod (a2), Paul Holyoke (a3), Tracy Scott (a4), Lorraine Holtslander (a5), Angeline Letendre (a6), Tess Moeke-Maxwell (a7), Linda Burhansstipanov (a8) and Thane Chambers (a1)...

Abstract

Objective:

The primary purpose of this metasynthesis study was to explore the end-of-life experiences of Indigenous peoples by synthesizing the findings of qualitative research.

Method:

Sandelowski and Barroso's methodology for synthesizing qualitative research was used and included (a) a comprehensive search, (b) appraising reports of qualitative studies, (c) classification of studies, and (d) synthesis of the findings. Research team members guided this process. This team was multidisciplinary and included Indigenous and non-Indigenous researchers from Canada, Australia, New Zealand, and the United States. Following a comprehensive search, 2255 studies were reviewed and assessed against five inclusion criteria: (a) studies on the experiences of Indigenous populations (all genders, 18 + years of age) at the end of life, (b) studies published in English from any country, (c) studies using qualitative and mixed-methods designs, and (d) studies published between 1993 and 2013.

Results:

Some 18 studies met the inclusion criteria, and their findings were synthesized. “Preparing the spirit” for transition to the next life was the overarching theme. “Preparing the spirit” occurred within the context of “where we come from.” Processes involved in “preparing the spirit” were healing, connecting, and protecting; through these processes, “what I want at the end of life” was realized. Although not the focus of the metasynthesis, a significant finding was that the studies reviewed identified very clear barriers within healthcare systems and current healthcare provider practices to “preparing the spirit.”

Significance of results:

The findings provide a beginning understanding of the end-of-life experiences of Indigenous peoples and a foundation for future research. More interpretive qualitative research is critical if palliative care services, the healthcare system, and healthcare providers are to reduce current barriers to “preparing the spirit” for the journey at the end of life.

Copyright

Corresponding author

Address correspondence and reprint requests to Wendy Duggleby, University of Alberta Faculty of Nursing, 11405 87 Avenue, Edmonton, AB T6 G 1C9 Canada. E-mail: wendy.duggleby@ualberta.ca.

References

Hide All
Assembly of First Nations (2005). First Nations action plan on continuing care. Ottawa: Assembly of First Nations.
Barkwell, D. (2005). Cancer pain: Voices of the Ojibway People. Journal of Pain and Symptom Management, 30, 454464.
Baydala, A., Placsko, C., Hampton, M., et al. (2006). A narrative of research with, by, and for Aboriginal peoples. Pimatisiwin, 4, 4765.
Bellamy, G. & Gott, M. (2013). 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. Health & Social Care in the Community, 21, 2634.
Blackhall, L.J., Murphy, S.T., Frank, G., et al. (1995). Ethnicity and attitudes toward patient autonomy. The Journal of the American Medical Association, 274, 820825.
Bowman, K.W. & Singer, P.A. (2001). Chinese seniors' perspectives on end-of-life decisions. Social Science & Medicine, 53, 455464.
Britten, N., Campbell, R., Pope, C., et al. (2002). Using meta ethnography to synthesize qualitative research: A worked example. Journal of Health Services & Research Policy, 7, 209215.
Burnette, L. & Kickett, M. (2009). “You are just a puppet”: Australian Aboriginal people's experience of disempowerment when undergoing treatment for end-stage renal disease. Renal Society of Australasia Journal, 5, 113118.
Castleden, H., Crooks, V.A., Hanlon, N., et al. (2010). Providers' perceptions of Aboriginal palliative care in British Columbia's rural interior. Health & Social Care in the Community, 18, 483491.
Clark, K. & Phillips, J. (2010). End of life care: The importance of culture and ethnicity. Australian Family Physician, 39, 210213.
Cowan, J.G. (2007). The elements of the Aborigine tradition, 2nd ed. Shaftsbury: Element Books.
Decourtney, C.A., Branch, P.K. & Morgan, K.M. (2010). Gathering information to develop palliative care programs for Alaska's Aboriginal peoples. Journal of Palliative Care, 26, 2231.
Durie, M. (2001). Mauri Ora: The dynamics of Maori health. Auckland, NZ: Oxford University Press.
Edwards, A., Pang, N., Shiu, V., 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, 24, 753770.
Egan, R.M.M. (2010). Spirituality in New Zealand hospice care . Doctoral dissertation. Dunedin, NZ: University of Otago. Available from http://hdl.handle.net/10523/442.
Feder, G.S., Hutson, M., Ramsay, J., et al. (2006). Women exposed to intimate partner violence. Expectations and experiences when they encounter healthcare professionals: A meta-analysis of qualitative studies. JAMA Internal Medicine, 166, 2237.
Halfe, L.B. (1989). The circle: Death and dying from a native perspective. Journal of Palliative Care, 5, 3741.
Hampton, J.W. (2005). End-of-life issues for American Indians: A commentary. Journal of Cancer Education, 20(Suppl. 1), 3740.
Hampton, M.R., Baydala, A., Bourassa, C., et al. , producers (2005). Completing the circle: End of life care with Aboriginal families [film]. Regina: Luther College, University of Regina.
Hampton, M., Baydala, A., Drost, C., et al. (2009). Bridging conventional Western health care practices with traditional Aboriginal approaches to end of life care: A dialogue between Aboriginal families and health care professionals. Canadian Journal of Nursing Informatics, 4, 2266.
Hampton, M., Baydala, A., Bourassa, C., et al. (2010). Completing the circle: Elders speak about end-of-life care with Aboriginal families in Canada. Journal of Palliative Care, 26, 614.
Haozous, E.A., Knobf, M.T. & Brant, J.M. (2011). Understanding the cancer pain experience in American Indians of the Northern plains. Psycho-Oncology, 20, 404410.
Holmes, E. & Holmes, L. (1995). Other cultures, elder years. 2nd ed. Thousand Oaks, CA: Sage Publications.
Kelley, M.L. (2010). An Indigenous issue: Why now? Journal of Palliative Care, 26, 5.
Kelly, L. & Minty, A. (2007). End-of-life issues for Aboriginal patients: A literature review. Canadian Family Physician, 53, 14591465.
Kelly, L., Linkewich, B., Cromarty, H., et al. (2009). Palliative care of First Nations people: A qualitative study of bereaved family members. Canadian Family Physician, 55, 394395.e7.
Kitzes, J.A. & Domer, T. (2004). Palliative care: An emerging issue for American Indians and Alaskan natives. Journal of Pain & Palliative Care Pharmacotherapy, 17, 201210.
Kwak, J. & Salmon, J.R. (2007). Attitudes and preferences of Korean-American older adults and caregivers on end-of-life care. Journal of the American Geriatrics Society, 55, 18671872.
Mark, G.T. & Lyons, A.C. (2010). Maori healers' views on wellbeing: The importance of mind, body, spirit, family and land. Social Science & Medicine, 70, 17561764.
Matsumura, S., Bito, S., Lui, H., et al. (2002). Acculturation of attitudes toward end of life care: A cross-cultural survey of Japanese Americans and Japanese. Journal of General Internal Medicine, 17, 531539.
McGrath, C.L. (2000). Issues influencing the provision of palliative care services to remote aboriginal communities in the Northern Territory. The Australian Journal of Rural Health, 8, 4751.
McGrath, P. (2006). Exploring Aboriginal people's experience of relocation for treatment during end-of-life care. International Journal of Palliative Nursing, 12, 102108.
McGrath, P. & Holewa, H. (2007). End-of-life care of Aboriginal peoples in remote locations: Language issues. Australian Journal of Primary Health, 13, 1827.
McGrath, P. & Patton, M.A. (2007). Indigenous understanding of hospice and palliative care: Findings from an Australian study. Journal of Hospice & Palliative Nursing, 9, 189197.
McGrath, P. & Phillips, E. (2008). Aboriginal spiritual perspectives: Research findings relevant to end-of-life care. Illness, Crisis & Loss, 16, 153171.
McGrath, P., Holewa, H., Ogilvie, K., et al. (2006). Insights on Aboriginal people's views of cancer in Australia. Contemporary Nurse, 22, 240254.
McGrath, P.D., Patton, M.A., Ogilvie, , et al. (2007). The case for Aboriginal health workers in palliative care. Australian Health Review, 31, 430439.
Nakao, M. & Ohara, C. (2014). The perspective of psychosomatic medicine on the effect of religion on the mind–body relationship in Japan. Journal of Religion and Health, 53, 4655.
National Aboriginal Health Organization (2012). Terminology of First Nations, Native, Aboriginal and Métis: NAHO glossary & terms. Available from http://www.aidp.bc.ca/terminology_of_native_aboriginal_metis.
O'Brien, V.A. (2012). Person-centered palliative care: A First Nations perspectives . Masters thesis. Hamilton, Ontario: McMaster University.
Poroch, N., Arabena, K., Tongs, J., et al. (2009). Spirituality and Aboriginal [eople's social and emotional wellbeing: A review. Discussion Paper Series, No. 11. Victoria: Cooperative Research Centre for Aboriginal Health.
Sandelowski, M. & Barroso, J. (2007). Handbook for synthesizing qualitative research. New York: Springer.
Seki, Y., Yamazaki, Y., Mizota, Y., et al. (2009). Should we tell the truth? Why families in Japan chose to tell their loved ones they were victims of iatrogenic HIV infection. Qualitative Health Research, 19, 723731.
Sharma, R.K., Khosla, N., Tulsky, J.A., et al. (2012). Traditional expectations versus U.S. realities: First- and second-generation Asian Indian perspectives on end-of-life care. Journal of General Internal Medicine, 27, 311317.
Shi, L. & Zhang, C. (2012). Spirituality in traditional Chinese medicine. Pastoral Psychology, 61, 959974.
Turner-Weeden, P. (1995). Death and dying from a Native American perspective. The Hospice Journal, 10, 1113.
Willis, J. (1999). Dying in country: Implications of culture in the delivery of palliative care in Indigenous Australian communities. Anthropology and Medicine, 6(3), 423435.
Zimmer, L. (2006). Qualitative meta-synthesis: A question of dialoguing texts. Journal of Advanced Nursing, 53, 311318.
Recommend this journal

Email your librarian or administrator to recommend adding this journal to your organisation's collection.

Palliative & Supportive Care
  • ISSN: 1478-9515
  • EISSN: 1478-9523
  • URL: /core/journals/palliative-and-supportive-care
Please enter your name
Please enter a valid email address
Who would you like to send this to? *
×

Keywords

Metrics

Altmetric attention score

Full text views

Total number of HTML views: 0
Total number of PDF views: 0 *
Loading metrics...

Abstract views

Total abstract views: 0 *
Loading metrics...

* Views captured on Cambridge Core between <date>. This data will be updated every 24 hours.

Usage data cannot currently be displayed