Mismatches between health service delivery and community expectations in the provision of secondary prophylaxis for rheumatic fever in New Zealand

Abstract Objective: Rheumatic fever (RF) recurrence prevention requires secondary prophylaxis for at least ten years. However, recurrences of rheumatic fever (RRF) persist disproportionately affecting Māori and Pacific youth. Reasons for recurrence rates are not well understood and commonly attributed to patient non‐adherence. This research explored Māori and Pacific family experiences of RRF to better understand barriers to accessing secondary prophylaxis to inform health service improvements. Methods: Participants were Māori and Pacific patients who had RRF or unexpected rheumatic heart disease and their family; and health professionals working in RF contexts. Kaupapa Māori, Talanga and Kakala Pacific qualitative methodologies were employed. Data were thematically analysed using a general inductive approach. Results: Data collection included 38 interviews with patients and families (n=80), six focus group interviews and nine interviews with health providers (n=33) from seven geographic regions. Three key themes were identified where mismatches occurred between services and community needs: 1. Model of delivery; 2. Interpersonal approaches to care; and 3. Adolescent care. Conclusions and Public health implications: Successful RRF prevention requires interventions to address structural causes of inequity, appropriate clinical guidelines and quality health services. Service‐delivery models should provide regular prophylaxis in an accessible manner through culturally‐safe, community‐based, age‐appropriate care.