For Pacific Peoples, being diagnosed with Parkinson’s is like being in a va’a/vaka on an unpredictable wave on the high seas, a University of Otago – Ōtākou Whakaihu Waka study has found.
The study, published in PLOS One and funded by the Michael J. Fox Foundation for Parkinson’s Research, explored the experiences of Pacific Peoples with Parkinson’s and their families in Aotearoa New Zealand through talanoa.
Lead author Charleen Silcock, of the School of Physiotherapy, says being diagnosed was “momentous” for the study’s participants as it unexpectedly and permanently changed their life direction.
“This new life-journey was compared to travelling on an unpredictable wave on the high seas in a va’a/vaka.
“Initially, participants felt overwhelmed and experienced a range of emotions such as depressive thoughts, anger, embarrassment, devastation, frustration, and anxiety. In the early stages, support was offered by the medical team but then this support dwindled and participants had to turn to their family and community for support.
“Eventually, they felt able to take the helm and voiced hope and optimism instead of fear and isolation. They drew strength from their spirituality and their deep genealogical connections to tupuna and to the past, from their families and communities, and this adjusted their sentiments to those of hope and optimism,” she says.
Senior author Professor Rose Richards, of Va’a o Tautai – Centre for Pacific Health, says it isn’t surprising participants felt their diagnosis was unexpected and unpredictable.
“Parkinson’s is seen as a ‘new’ health condition for Pacific Peoples, which they knew very little about.”
In Aotearoa, one in 500 people have Parkinson’s, and, despite being the youngest population group in the country, Pacific Peoples have the third highest prevalence for the condition (160 per 100,000).
“We believe the combination of the lack of knowledge about Pacific people with Parkinson’s and current barriers to healthcare services for Pacific Peoples may prevent those presenting with the signs and symptoms of Parkinson’s seeking health care. This means the current prevalence may be largely underestimated,” Professor Richards says.
Senior author Professor Leigh Hale, also of the School of Physiotherapy, says there are important changes healthcare services need to make to better support Pacific Peoples with Parkinson’s.
“They need to improve how they offer accessible care and support Pacific communities in culturally appropriate and safe ways that consider the permanent and progressive nature of the condition,” she says.
These changes include collecting ethnicity data to both address health equity and ensure delivery of culturally appropriate care; having a healthcare workforce which understands the values and realities of Pacific individuals, families and communities; and provide ongoing healthcare support to help patients live well with the lifelong condition.
“Whilst ‘the diagnosis’ is important, it is only the beginning of the journey. Possibly more important is the continuity of support from the health system and its services and reduction in the feeling of abandonment.
“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,” she says.
Study participants asked for the researchers to develop short videos of them talking about what they think other Pacific People newly diagnosed with Parkinson’s and the public ought to know and their key messages for health professionals and health professional students. These videos will soon be available to view on https://healthify.nz/
Publication:
Experiences of Pacific Peoples and their ‘āiga/ kāinga/kāiga/vuvale living with Parkinsons: A qualitative study
Charleen Silcock, Megan Lupe, Salote Makasini, Leigh Hale, Christopher Higgs, Rose Richards
PLOS One
https://doi.org/10.1371/journal.pone.0355989
