A gap between indigenous patients’ understanding of cardiac inherited disease and the western biomedical approach was highlighted in a qualitative study using Talanoa and Kaupapa Māori methodologies. Semi-structured interviews were undertaken with 14 Māori and 14 Pasifika patients with a cardiac inherited disease, and seven of their family members. Common themes identified as important in shaping participants’ perceptions and experiences of cardiac inherited disease were: (1) difficulty in understanding the disease as separate from symptoms; (2) considering ancestors and future generations; and (3) the role of spirituality and religion. Findings support the need for transparency and culturally appropriate practices in healthcare, concluded the study authors.
With heart disease, acquired ischaemic or infection-related (rheumatic fever) cardiac conditions are prioritised in Aotearoa. However, significant inequities also exist for inherited heart disease. I recently spent a morning hearing from whānau living with inherited cardiomyopathy, and the strain for caregivers, whānau finances and work opportunities. It is refreshing to see this paper present the whānau voice.
Independent commentary by Dr. Matire Hardwood
Dr Matire Harwood (Ngapuhi) has worked in Hauora Māori, primary health and rehabilitation settings as clinician and researcher since graduating from Auckland Medical School in 1994. She also holds positions on a number of boards, committees and advisory groups including the Health Research Council. Matire lives in Auckland with her whānau including partner Haunui and two young children Te Rangiura and Waimarie.
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