Patient views on the management of rheumatic fever and rheumatic heart disease in the Kimberley: a qualitative study.

Objective: To describe, from a patient perspective, factors leading to suboptimal management of individuals with rheumatic fever (RF) and rheumatic heart disease (RHD) among members of the Kimberley population.

Method: Qualitative in-depth semistructured and repeated interviews of seven Kimberley patients, or parents of children, with rheumatic fever and/or rheumatic heart disease, during 1998.

Results: Participants showed variable levels of understanding about RF/RHD, often relating to the need for secondary prophylaxis. Compliance with medication was closely linked with positive patient-staff interactions. From the perspective of health care, living in a remote location was frequently described as a negative influence. Participants desire more accessible and culturally appropriate opportunities for learning about their disease.

Conclusions: Participants focused on issues closely related to effective and ineffective management of RF/RHD. The lessons learned are indicators for health staff attempting to improve the quality of management that people receive.