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

Abstract

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 Māori and Pasifika living with a cardiac inherited disease (CID).

Methods and Measures

Semi-structured interviews were conducted with 14 Māori and 14 Pasifika patients living with a cardiac inherited disease and seven of their family members, using Talanoa and Kaupapa Māori 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.

Keywords:

• Cardiac inherited diseases
• ethnic minorities
• Māori
• Pasifika
• illness perceptions

Disclosure statement

The authors report no conflicts of interest.

Funding details

No funding was acquired for this study.

Data availability statement

Due to the nature of this research, participants of this study did not agree for their data to be shared publicly, so supporting data are not available.