Experiences of Pacific Peoples and their 'āiga/kāinga/kāiga/vuvale living with Parkinsons: A qualitative study

Parkinson's is one of the fastest growing neurological disorders worldwide, yet little is known about this disorder in Pacific Peoples in Aotearoa New Zealand. This study aimed to explore the experiences and impact of Parkinson's on Pacific Peoples living with Parkinson's and their 'āiga/kāinga/kāiga/vuvale [family] in Aotearoa New Zealand. Underpinned by Talanoa research methodology [a Pacific phenomenological methodology founded on oral traditions of producing, sharing and transferring knowledge through conversation], eight consenting Pacific adults (>18 years) living in Aotearoa and diagnosed with Parkinson's, irrespective of type, were invited to participate in talanoa [face-to-face conversations that understand the cultural relationality and connectedness of those involved]. Data were transcribed and analysed using Reflexive Thematic Analysis. Pacific researchers lead the research, data collection and analysis, and facilitated subsequent talanoa with participants and their wider communities to discuss how findings could be used to benefit these communities. The key finding was an overarching theme portraying a metaphor of a journey that participants had and were navigating from the time of their Parkinson's diagnosis. This journey was described as travelling in unpredictable and turbulent seas in a va'a/vaka (a traditional Polynesian outrigger canoe). This overarching metaphor comprised four themes (1) An unexpected journey, (2) Who's on the va'a/vaka with me? (3) Navigating your va'a/vaka - looking up to the stars, and (4) Steering your va'a/vaka - finding your way. For our participants, Parkinson's was seen as a "new" health condition for Pacific Peoples. Strengthening knowledge and understanding of this disorder in ways that are acceptable and accessible to families and their communities is essential to harness the community spirit that defines Pacific culture. Healthcare services also need to improve how they offer accessible care and support Pacific communities in culturally appropriate and safe ways that considers the permanent and progressive nature of Parkinson's.