Rheumatic Fever remains a significant health problem in New Zealand with persistent ethnic and social inequities and Maori and Pacific peoples being most affected. Little is known about the lived experiences of whanau affected by this disease. This research aimed to explore Māori and Pacific whānau experiences and understandings of rheumatic fever (RF) and rheumatic heart disease (RHD), to fill these knowledge gaps and inform health service improvements.
A kaupapa Māori framework and talanga and kakala Pacific methodologies were employed. Whānau interviews with 38 Māori and Pacific whanāu (n=80), six focus groups with 24 secondary prophylaxis providers, and nine semi-structured interviews with other health care providers were conducted. 113 people from seven North Island District Health Boards (DHBs) participated in the study.
Systemic failures within the health system contributed to the development of recurrent RF and RHD. Key failings included missed and delayed diagnosis, the inability of services to meet the complex living contexts of whānau, continuing experiences of racism in healthcare contexts, the failure to recognise RF and RHD as chronic conditions, especially in adolescence, and the negative stereotyping portrayed by, and the guilt associated with, the national Rheumatic Fever Prevention campaign. Protective factors that reduced the risk of recurrence of RF and RHD included: whānau advocacy and support, good rapport and communication between whānau and health care professionals, and good communication and referral pathways between healthcare providers both within and between DHBs. Recommendations for improving health services are made.