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Indigenous people's experiences at the end of life

Published online by Cambridge University Press:  15 June 2015

Wendy Duggleby ,
Samantha Kuchera ,
Rod MacLeod ,
Paul Holyoke ,
Tracy Scott ,
Lorraine Holtslander ,
Angeline Letendre ,
Tess Moeke-Maxwell ,
Linda Burhansstipanov  and
Thane Chambers
Wendy Duggleby*
Affiliation:
University of Alberta Faculty of Nursing, Edmonton, Alberta, Canada
Samantha Kuchera
Affiliation:
University of Alberta Faculty of Nursing, Edmonton, Alberta, Canada
Rod MacLeod
Affiliation:
HammondCare and University of Sydney, Sydney, Australia
Paul Holyoke
Affiliation:
Saint Elizabeth Research Center, Saint Elizabeth Health Care, Ontario, Canada
Tracy Scott
Affiliation:
Education Services, Saint Elizabeth First Nations, Inuit and Métis Program, Winnipeg, Manitoba, Canada
Lorraine Holtslander
Affiliation:
College of Nursing, University of Saskatchewan, Saskatoon, Canada
Angeline Letendre
Affiliation:
Alberta Cancer Prevention Legacy Fund, Population, Public, and Aboriginal Health, Alberta Health Services, Edmonton, Alberta, Canada
Tess Moeke-Maxwell
Affiliation:
University of Auckland, Auckland, New Zealand
Linda Burhansstipanov
Affiliation:
Native American Cancer Research Corporation, Pine, Colorado
Thane Chambers
Affiliation:
University of Alberta Faculty of Nursing, Edmonton, Alberta, Canada
*
Address correspondence and reprint requests to Wendy Duggleby, University of Alberta Faculty of Nursing, 11405 87 Avenue, Edmonton, AB T6 G 1C9Canada. E-mail: [email protected].
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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.

Keywords

Indigenous peoplesEnd of lifePalliative careMetasynthesis
Type
Original Articles
Information
Palliative & Supportive Care , Volume 13 , Issue 6 , December 2015 , pp. 1721 - 1733
Copyright
Copyright © Cambridge University Press 2015 

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References

REFERENCES

Assembly of First Nations (2005). First Nations action plan on continuing care. Ottawa: Assembly of First Nations.Google Scholar
Barkwell, D. (2005). Cancer pain: Voices of the Ojibway People. Journal of Pain and Symptom Management, 30, 454–464.CrossRefGoogle ScholarPubMed
Baydala, A., Placsko, C., Hampton, M., et al. (2006). A narrative of research with, by, and for Aboriginal peoples. Pimatisiwin, 4, 47–65.Google Scholar
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, 26–34.Google Scholar
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, 820–825.Google Scholar
Bowman, K.W. & Singer, P.A. (2001). Chinese seniors' perspectives on end-of-life decisions. Social Science & Medicine, 53, 455–464.Google Scholar
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, 209–215.Google Scholar
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, 113–118.Google Scholar
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, 483–491.Google Scholar
Clark, K. & Phillips, J. (2010). End of life care: The importance of culture and ethnicity. Australian Family Physician, 39, 210–213.Google Scholar
Cowan, J.G. (2007). The elements of the Aborigine tradition, 2nd ed. Shaftsbury: Element Books.Google Scholar
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, 22–31.Google Scholar
Durie, M. (2001). Mauri Ora: The dynamics of Maori health. Auckland, NZ: Oxford University Press.Google Scholar
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, 753–770.Google Scholar
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.Google Scholar
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, 22–37.Google Scholar
Halfe, L.B. (1989). The circle: Death and dying from a native perspective. Journal of Palliative Care, 5, 37–41.Google Scholar
Hampton, J.W. (2005). End-of-life issues for American Indians: A commentary. Journal of Cancer Education, 20(Suppl. 1), 37–40.Google Scholar
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.Google Scholar
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, 22–66.Google Scholar
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, 6–14.Google Scholar
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, 404–410.Google Scholar
Holmes, E. & Holmes, L. (1995). Other cultures, elder years. 2nd ed. Thousand Oaks, CA: Sage Publications.Google Scholar
Kelley, M.L. (2010). An Indigenous issue: Why now? Journal of Palliative Care, 26, 5.Google Scholar
Kelly, L. & Minty, A. (2007). End-of-life issues for Aboriginal patients: A literature review. Canadian Family Physician, 53, 1459–1465.Google Scholar
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, 394–395.e7.Google Scholar
Kitzes, J.A. & Domer, T. (2004). Palliative care: An emerging issue for American Indians and Alaskan natives. Journal of Pain & Palliative Care Pharmacotherapy, 17, 201–210.Google Scholar
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, 1867–1872.Google Scholar
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, 1756–1764.Google Scholar
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, 531–539.Google Scholar
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, 47–51.Google Scholar
McGrath, P. (2006). Exploring Aboriginal people's experience of relocation for treatment during end-of-life care. International Journal of Palliative Nursing, 12, 102–108.CrossRefGoogle ScholarPubMed
McGrath, P. & Holewa, H. (2007). End-of-life care of Aboriginal peoples in remote locations: Language issues. Australian Journal of Primary Health, 13, 18–27.Google Scholar
McGrath, P. & Patton, M.A. (2007). Indigenous understanding of hospice and palliative care: Findings from an Australian study. Journal of Hospice & Palliative Nursing, 9, 189–197.Google Scholar
McGrath, P. & Phillips, E. (2008). Aboriginal spiritual perspectives: Research findings relevant to end-of-life care. Illness, Crisis & Loss, 16, 153–171.CrossRefGoogle Scholar
McGrath, P., Holewa, H., Ogilvie, K., et al. (2006). Insights on Aboriginal people's views of cancer in Australia. Contemporary Nurse, 22, 240–254.CrossRefGoogle ScholarPubMed
McGrath, P.D., Patton, M.A., Ogilvie, , et al. (2007). The case for Aboriginal health workers in palliative care. Australian Health Review, 31, 430–439.CrossRefGoogle ScholarPubMed
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, 46–55.Google Scholar
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.Google Scholar
O'Brien, V.A. (2012). Person-centered palliative care: A First Nations perspectives . Masters thesis. Hamilton, Ontario: McMaster University.Google Scholar
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.Google Scholar
Sandelowski, M. & Barroso, J. (2007). Handbook for synthesizing qualitative research. New York: Springer.Google Scholar
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, 723–731.Google Scholar
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, 311–317.Google Scholar
Shi, L. & Zhang, C. (2012). Spirituality in traditional Chinese medicine. Pastoral Psychology, 61, 959–974.Google Scholar
Turner-Weeden, P. (1995). Death and dying from a Native American perspective. The Hospice Journal, 10, 11–13.Google Scholar
Willis, J. (1999). Dying in country: Implications of culture in the delivery of palliative care in Indigenous Australian communities. Anthropology and Medicine, 6(3), 423–435.Google Scholar
Zimmer, L. (2006). Qualitative meta-synthesis: A question of dialoguing texts. Journal of Advanced Nursing, 53, 311–318.Google Scholar