Parkinson's an unexpected and unpredictable journey for Pacific Peoples

For Pacific Peoples living with Parkinson's in Aotearoa New Zealand, being diagnosed can feel like being on an unpredictable wave on the high seas. A University of Otago – Ōtākou Whakaihu Waka study, published in PLOS One, explored the experiences of Pacific Peoples with Parkinson's and their families. Lead author Charleen Silcock says the diagnosis is a momentous and unexpected event that permanently changes their life direction.

Initially, participants felt overwhelmed and experienced a range of emotions including depression, anger, embarrassment, devastation, frustration, and anxiety. Support was initially provided by the medical team, but as time passed, this support dwindled and participants had to rely on their family and community for help. Eventually, they felt empowered and voiced hope and optimism, drawing strength from their spirituality and deep genealogical connections to their tupuna and past, as well as their families and communities.

Senior author Professor Rose Richards notes that Parkinson's is a new health condition for Pacific Peoples, with one in 500 people affected and Pacific Peoples having the third-highest prevalence of the condition in Aotearoa. The combination of limited knowledge about Parkinson's in Pacific Peoples and current barriers to healthcare services may prevent those with symptoms from seeking help, potentially underestimating the current prevalence.

Senior author Professor Leigh Hale emphasizes the need for health care services to improve accessible care and support Pacific communities in culturally appropriate ways that recognize the permanent and progressive nature of the condition. This includes collecting ethnicity data, having a healthcare workforce that understands Pacific values and realities, and providing ongoing support to help patients live well with the lifelong condition.

Study participants asked researchers to create short videos discussing what others newly diagnosed with Parkinson's and the public should know, as well as key messages for healthcare professionals and students. These videos will soon be available.