Challenging perceptions of non-compliance with rheumatic fever prophylaxis in a remote Aboriginal community

Aim: To identify factors that affect rheumatic fever prophylaxis for remote-living Aboriginal patients, and to determine the proportion who received adequate prophylaxis. Design and setting: Interview (with analysis based on principles of grounded theory) of patients with a history of rheumatic fever or rheumatic heart disease and their relatives, and health service providers in a remote Aboriginal community; audit of benzathine penicillin coverage of patients with rheumatic heart disease. Participants: 15 patients with rheumatic heart disease or a history of rheumatic fever, 18 relatives and 18 health care workers. Results: Patients felt that the role of the clinic was not only to care for them physically, but that staff should also show nurturing holistic care to generate trust and treatment compliance. Differing expectations between patients and health care providers relating to the responsibility for care of patients absent from the community was a significant factor in patients missing injections. Neither a biomedical understanding of the disease nor a sense of taking responsibility for one's own health were clearly related to treatment uptake. Patients did not generally refuse injections, and 59% received adequate prophylaxis (>75% of prescribed injections). Conclusion: In this Aboriginal community, concepts of being cared for and nurtured, and belonging to a health service were important determinants of compliance.