Navigating PINK1 Parkinson's Disease: Narratives of Pacific Patients and Caregivers.

Abstract

Parkinson's disease in its common form is a sporadic disease of older age affecting men more than women, with onset after the age of 60 years. However, Parkinson's disease, caused by variants in the PINK1 gene, affects males and females equally and causes early-onset Parkinson's disease. Furthermore, although it is rare elsewhere in the world, it is relatively common among Pacific populations, where carrier rates can reach 1 in 18 for a specific variant. All these differences between PINK1 Parkinson's disease and typical Parkinson's disease would be expected to affect people differently; however, the understanding of how this form of Parkinson's disease affects Pacific peoples is limited. Exploring the lived experiences of people with PINK1 Parkinson's disease and their caregivers is essential for informing culturally responsive care. We employed a specific Pacific qualitative research approach called Talanoa, which is centred on storytelling and open dialogue sessions, to explore the experiences of Pacific people with PINK1 Parkinson's disease and their caregivers. Data were analysed thematically. We studied 16 participants (11 patients and 5 caregivers). Two main themes were identified: Adaptation Struggles and Positive Adaptation. Adaptation Struggles captured personal (e.g., impaired mental state and medication management), social (e.g., progressive disengagement from social and community life), cultural (e.g., stigma and the mismatch between cultural beliefs and biomedical perspectives of Parkinson's disease) and systemic challenges (e.g., limited awareness and unmet needs). Positive Adaptation reflected participants' efforts towards normalisation and reliance on support networks such as family, church and community. Enhancing services and awareness of PINK1 Parkinson's disease through culturally responsive care delivered by healthcare providers and health workers can facilitate early detection, improve medical management and enhance psychosocial well-being. Collaboration among researchers, clinicians and Pacific communities is vital to reducing diagnostic delays and improving long-term outcomes.