Living with rheumatic fever and rheumatic heart disease in Victoria, Australia: a qualitative study

Abstract

Background: In Victoria, Australia, children with Pacific Islander (‘Pacific’) ethnicities are overrepresented in acute rheumatic fever (ARF) and rheumatic heart disease (RHD). In June 2023, a Victorian RHD control program was initiated. To inform public health and clinical practice, we described young Pacific patients’ and their caregivers’ understandings and experiences of ARF/RHD, and identified possible ways to improve the delivery of clinical care. Methods: We established a project reference group including local Pacific people to guide this research. Pacific patients who attended an ARF/RHD clinic at The Royal Children’s Hospital, Melbourne, were invited to participate, as were their caregivers. A Samoan researcher conducted qualitative ‘talanoa’ (conversational) interviews with patients and caregivers. A second researcher conducted semi-structured interviews with treating clinicians and other stakeholders. Interview transcripts underwent thematic analysis guided by the Tuilaepa Youth Mentoring Services Pacific Youth Wellbeing Framework. Results: We interviewed 27 participants. This included nine patients and nine caregivers, all of whom were Samoan. These 18 participants expressed a desire to learn more about ARF/RHD and connect with other affected people. While some shared their experiences of having well-liked and trusted healthcare providers, patients often struggled to have two-way clinical conversations. The need to support clinicians working with high-risk populations to improve their awareness of ARF was identified. Receiving treatment on time was a top priority for affected families, despite injection pain, inconvenience and financial costs. The need to support continuity of care for young adult patients was raised by participants. Conclusions: Pacific people living with ARF/RHD and their families require additional support to receive high quality management in Victoria. Introducing a patient register and a specialist RHD nurse would enhance access to treatment, as would removing cost barriers, improving clinical awareness of ARF/RHD and creating Victoria-specific patient resources.