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Bereaved Families’ Perspectives of End-of-Life Care. Towards a Bicultural Whare Tapa Whā Older person’s Palliative Care Model

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Abstract

The views of family carers who provide end of life care to people of advanced age are not commonly known. We conducted a bicultural study with bereaved New Zealand Māori (indigenous) and non-indigenous family carers who, on behalf of their older family member, reflected on the end of life circumstances and formal and informal care experienced by the older person. Semi-structured interviews were undertaken with 58 people (19 Māori and 39 non-Māori), who cared for 52 family members who died aged over 80 years. A Kaupapa Māori thematic analysis of family/whānau perspectives identified examples of good holistic care as well as barriers to good care. These are presented in a proposed Whare Tapa Whā Older Person’s Palliative Care model. Good health care was regarded by participants as that which was profoundly relationship-oriented and upheld the older person’s mana (authority, status, spiritual power) across four critical health domains: Whānau (social/family), Hinengaro (emotional/mental), Wairua (spiritual) and Tinana (physical) health domains. However, poor health care on one level impacted on all four domains affecting (reducing) mana (status). The “indigenous” model was applicable to both indigenous and non-indigenous experiences of end of life care for those in advanced age. Thus, Indigenous perspectives could potentially guide and inform end of life care for all.

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Notes

  1. Non-indigenous people discussed in this paper are the white descendants of settler colonists in New Zealand. They are also referred to as non-Māori.

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Funding

This work was supported by the Health Research Council (HRC) New Zealand, as part of Te Pākeketanga (HRC 13/293).

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Authors and Affiliations

  1. School of Nursing, University of Auckland, Auckland, New Zealand

    Tess Moeke-Maxwell, Aileen Collier, Lisa Williams, Stella Black & Merryn Gott

  2. School of Population Health, University of Auckland, Auckland, New Zealand

    Janine Wiles

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  1. Tess Moeke-Maxwell
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  2. Aileen Collier
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  3. Janine Wiles
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  4. Lisa Williams
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  5. Stella Black
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  6. Merryn Gott
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Correspondence to Tess Moeke-Maxwell.

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Ethics approval was granted by The University of Auckland Human Participants Ethics Committee on 17 June 2013 (UAHPEC: 9686).

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Moeke-Maxwell, T., Collier, A., Wiles, J. et al. Bereaved Families’ Perspectives of End-of-Life Care. Towards a Bicultural Whare Tapa Whā Older person’s Palliative Care Model. J Cross Cult Gerontol 35, 177–193 (2020). https://doi.org/10.1007/s10823-020-09397-6

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  • DOI: https://doi.org/10.1007/s10823-020-09397-6

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