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

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. ### Competing Interest Statement The authors have declared no competing interest. ### Funding Statement This study was funded through a Murdoch Childrens Research Institute Early Career Award made out to JO. It was also funded by a National Health and Medical Research Council Investigator Grant made to AS. ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes The details of the IRB/oversight body that provided approval or exemption for the research described are given below: The Royal Children's Hospital Ethics Committee, Melbourne, Victoria, Australia has approved this research I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable. Yes For participant privacy reason, the raw interview data is not available.