Labour of Love and Duty: Experiencing family caregiving for older adults in socioculturally diverse communities in New Zealand

Abstract

The Aotearoa/New Zealand population is ageing; family are increasingly in demand to support older adults’ day-to-day routines and selfmanagement of complex chronic conditions. However, the ‘informal’ family caregiving experiences of individuals, particularly those from multiple minority backgrounds, are not well understood. This doctoral thesis aimed to understand the lived experiences of New Zealanders from socioculturally diverse backgrounds caring for an older family member with complex chronic conditions. Specifically, I was guided by three research questions to explore 1) the experiences of “being a ‘family carer’” in different families, 2) how individuals made sense of their caregiving experiences, and 3) how understandings gained from family carers’ experiences can be translated to inform and improve support for caregiving. Philosophical tenets from the writings of Heidegger and Gadamer provided the theoretical foundation for this study. 40 Māori, New Zealand European and Chinese family members (spouses, adult children, a grandchild, and a cousin) caring for an older adult were recruited from three communitybased primary healthcare case studies. Drawing on their life stories, I inquired and interpreted the meanings of family caregiving using an interpretive phenomenological approach. Participants’ experienced everyday caregiving through recollections of in-the-moment activities and reflections of caregiving across time. Phenomenological descriptions of “being there” for the care recipient whilst interacting within a family dynamic formed the main narrative thread of their caregiving experiences. Health service engagement was an intermittent part of daily caregiving routines; the relationship with general practice provided the most common connection to formal care. Individuals made sense of caregiving through the interplay between Heidegger’s tenets of selfhood and worldhood. Self-understandings were presented in three self-narratives—‘I am the one’, ‘I am a [family member]’, ‘I am lost’— that provided a place for interpreting identities experienced in caregiving. ‘Being with others’ across layers of familial worldhood provided clearings to understand the intersections of family history, gender and cultural norms. Family-centred models of care improve health service engagement with families caring for older adults. Meanings and insights gained from this study introduce future research opportunities for bridging lived understandings of caregiving and carer support services.