• Palliative medicine · Jan 2018

    What is the role of community at the end of life for people dying in advanced age? A qualitative study with bereaved family carers.

    • Merryn Gott, Janine Wiles, Tess Moeke-Maxwell, Stella Black, Lisa Williams, Ngaire Kerse, and Gabriella Trussardi.
    • 1 School of Nursing, The University of Auckland, Auckland, New Zealand.
    • Palliat Med. 2018 Jan 1; 32 (1): 268-275.

    BackgroundNew public health approaches to palliative care prioritise the role of community at end of life. However, little is known about community support for the increasing numbers of people dying in advanced age.AimTo explore the role of community at end of life for people dying in advanced age from the perspective of their bereaved family caregivers.DesignA constructionist framework underpinned a qualitative research design. Data were analysed using critical thematic analysis.Setting/ParticipantsA total of 58 participants (19 Māori and 39 non-Māori) who cared for 52 family members who died at >80 years of age participated in semi-structured interviews.ResultsA reduction in the social networks and community engagement of the older person was identified in the end-of-life period. Numerous barriers to community engagement in advanced age were identified, including poor health (notably dementia), moving into an aged care facility and lack of access due to transport difficulties. An active withdrawal from community at end of life was also noted. Carers felt limited support from community currently, but identified that communities could play a particular role in reducing social isolation and loneliness among people of advanced age prior to death.ConclusionOur study provides strong support for public health approaches to palliative care that advocate building social networks around people who are dying and their family carers. However, it also indicates that strategies to do so must be flexible enough to be responsive to the unique end-of-life circumstances of people in advanced age.

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