Perspectives and experiences of Maori and Pasifika peoples living with cardiac inherited disease: a qualitative study

Objective Cardiac inherited diseases can have considerable psychosocial effects, including lifestyle limitations, anxiety and depression. Most research to date on patient experiences of CID has been conducted with people from Western cultures, yet culture can shape patient views and experiences of health. The aim of this research was to explore the experiences and perspectives of Maori and Pasifika living with a cardiac inherited disease (CID). Methods and Measures Semi-structured interviews were conducted with 14 Maori and 14 Pasifika patients living with a cardiac inherited disease and seven of their family members, using Talanoa and Kaupapa Maori methodologies. Themes from the interviews were identified using interpretative phenomenological analysis. Results Three common themes were identified as important in shaping participants' perceptions and experiences of CID: (1) difficulty in understanding the disease as separate from symptoms, (2) considering ancestors and future generations and (3) the role of spirituality and religion. Conclusion This study highlights a gap between indigenous patients' understanding of CID and the western biomedical approach. Patients' understanding and treatment behaviours depend on symptoms, familial ties and spirituality. The findings support the need for transparency and culturally appropriate practices in healthcare. Considering these aspects may help to reduce health inequities for these populations.

Automated summary

This study explores the experiences and perspectives of Maori and Pasifika living with a cardiac inherited disease. The findings reveal a gap between indigenous patients' understanding of the disease and the western biomedical approach. Patients' understanding and treatment behaviors are influenced by symptoms, familial ties, and spirituality. The study emphasizes the importance of transparency and culturally appropriate practices in healthcare to reduce health inequities.