Psychological Perspectives of Māori and Pasifika Peoples Living with Cardiac Inherited Disease

Abstract

Cardiac Inherited diseases (CID) are rare genetic conditions which place people at an increased risk of sudden death. Combined with significant restrictions and impairments in daily functioning, CID can increase the risk of experiencing psychological distress including anxiety and depression. Māori and Pasifika communities with chronic conditions often face more physical and psychological complications, higher morbidity and mortality rates, and less accessibility to healthcare services than New Zealand Europeans. However, no research to date has investigated cultural differences in psychological factors between Māori and Pasifika peoples with CID and their New Zealand European counterparts. Research with these communities may further the understanding of cultural issues faced by patients and guide the provision of support and healthcare. This mixed-method phenomenological study was guided by Kaupapa Māori and Talanoa frameworks to explore the lived experiences of Māori and Pasifika people with CID. Questionnaire-based surveys assessed Māori/Pasifika (n=21) and New Zealand European (n=151) scores on multiple CID-related psychological outcomes including illness and risk perceptions, anxiety, depression and treatment perceptions. Life problems related to CID were also measured in this study. Differences in group sizes necessitated the use of nonparametric testing. In-depth Talanoa interviews were also conducted with Māori (n=14) and Pasifika (n=14) participants and their whānau (family) living with CID. These covered five broad areas: 1) conceptualisations of CID, 2) psychosocial impacts, 3) perceptions of treatment, 4) perceptions of genetic testing, and 5) perceptions of specialist cardiac clinics. Interviews were transcribed and analysed using interpretative phenomenological analysis. All participants were recruited from the Cardiac Inherited Disease Group National Registry. Quantitative results indicated that Māori and Pasifika participants held significantly different perceptions about CID compared New Zealand Europeans. This included longer duration, stronger identity, and higher severe symptom risk beliefs. Fewer Māori and Pasifika participants made genetic and hereditary attributions about their CID than did New Zealand Europeans. Talanoa with participants reflected the potential role of spirituality and religiosity, co-morbidities, family and personal experience in making sense of their condition. Māori and Pasifika participants also experienced significantly higher levels of anxiety, more physical, practical, spiritual and familial problems compared to New Zealand Europeans. Further, median PHQ 9 scores indicated clinically significant levels of depression in Māori and Pasifika participants. Potential sources of psychological distress discussed in Talanoa include loss, widespread lifestyle restrictions, testing and impacts on whānau. In terms of medication, Māori and Pasifika participants reported being advised by their physician to take a higher number of pills to manage their condition than did their New Zealand European counterparts. Scores of perceived medication necessity and concern were comparable between groups. Participant narratives in Talanoa indicated ambivalent attitudes towards both beta-blockers and implantable cardioverter defibrillators (ICD). Concerns of side-effects, potency and lifelong therapy were tolerated in favour of the benefits afforded, such as independence and security. Further, there were cultural differences in definitions of medication adherence. Here, while reported adherence rates were comparable between Māori and Pasifika participants and New Zealand Europeans, Talanoa sessions revealed that Māori and Pasifika peoples often modified doses based on medication efficacy beliefs. This may represent the exercising of tino rangatiratanga (self-determination) in their own care. Experiences with genetic testing and the specialist cardiac clinic were only explored qualitatively. Engaging in genetic testing was perceived as fulfilling obligations to whakapapa (genealogy) and future generations. However, participants were worried about potential exploitation and misuse of precious samples. Finally, while valuing the specialist cardiac clinic for the resources it offers, Māori and Pasifika participants especially appreciated staff members who were mindful of whakawhanaungatanga/tausi vā (rapport building), open to cultural nuances, empathetic, inclusive of whānau and who treated them respectfully. This study offers valuable insight into the experiences of Māori and Pasifika peoples living with CID. It highlights the importance of cultural beliefs and practices to making sense of illness, considering treatment, engaging in genetic testing and accessing specialist cardiac clinics. These findings support the need for transparency and cultural safety practices in genetic testing and healthcare provision. Future research is needed to examine changes in the needs and experiences of Māori and Pasifika across time and the influence of CID-specific health literacy on well-being in this group.