Listen to my Heart: Global RHD Community meet to discuss research agenda
On 12 September 2016, representatives drawn from different parts of the RHD community met in Cape Town, South Africa, to discuss how to strengthen and develop a qualitative and sociological research agenda for rheumatic heart disease.
The meeting was convened by the University of Cape Town (UCT) and RhEACH – co-founders of RHD Action). Participants included people living with RHD, health workers, researchers, clinicians and advocates. Their discussions were anchored in the experiences of people living with RHD, to ensure that future research reflects the realities of patients’ day-to-day lives.
In her opening remarks, co-convener Dr Jantina de Vries (UCT) addressed the aims of the meeting: ‘how can we ensure that when we talk about RHD we talk about its totality’? The session was co-convened by Dr Clancy Read (Telethon Kids Institute). To this end, participants broke out into small groups to identify the various points at which a person might enter the health system, which barriers might prevent him or her from accessing care, and what opportunities exist to address gaps in the health system.
These initial discussions drew attention to a wide variety of issues such as the stigma experienced by patients, long waiting lists at health care facilities and the lack of affordability of care, particularly for heart surgery. Participants also found that there was a need to develop a non-medical patient journey in addition to the Continuum of Care, which focuses on how patients relate to the health system.
Following this activity, five people living with RHD – from Uganda and the South African provinces of Limpopo and the Western Cape – spoke about their experiences with the disease. Participants quickly realized that there was no typical patient journey, with each participant having experienced a different path to diagnosis and treatment.
Flavia – a cardiac nurse from Uganda whose RHD was diagnosed shortly after the birth of her child – described the fear she felt upon her diagnosis. She recounted the trauma of having to secure funding for expensive surgery while caring for her newborn baby. She also emphasised that she had to live with the stigma of a chronic disease, associated by many people in Uganda with HIV/AIDS. Nevertheless she expressed the support and comfort she had received from her husband and through her religion.
Anna, from the Western Cape in South Africa, noted the anxiety and stress she had experienced following her heart operation, but that she had received support from a social worker and clear information from her doctor regarding post-operative management of her disease. Bongani – also from the Western Cape – similarly praised the information given by medical staff, and said he appreciated the solidarity with other RHD patients when visiting the hospital for blood tests.
Tlangelani and Confidence – both from Limpopo province – raised the issue of late or misdiagnosis. Tlangelani was initially been diagnosed with asthma before seeking diagnosis in a private hospital, while Confidence saw a traditional healer, and health workers in district and provincial hospitals before being diagnosed by a paediatrician with training in cardiology.
Presentations of Ongoing Research
The afternoon session began with presentations from researchers currently conducting qualitative or sociological research on RHD in South Africa, Tanzania, Uganda and Australia.
Dr Isaac Ssinabulya and Amy Scheel (Uganda Heart Institute) praised the capacity of adult and paediatric support groups to improve patient adherence. Dr Ssinabulya also spoke about the success of a doctor-patient WhatsApp group in allowing patients to easily ask their doctor questions about RHD. Describing the initiative as an “extension of medical school”, Dr Ssinabulya said that the experience “makes me feel part of a complete contribution to someone’s life.”
The need for clear communication between patients and health workers was evident in a presentation from Alice Mitchell, who provided a summary of research underway in the Northern Territory in Australia. The study is comprised of interviews, mostly with adolescent boys living with rheumatic fever and RHD.
She noted that while, blame was often placed on Indigenous communities for not adhering to BPG injections, conversely patients felt that doctors should take more responsibility to help them access health services. However she added that in future studies, Indigenous communities would assume more responsibility in driving research and awareness of RHD.
In her presentation of a small qualitative study in Mwanza, Tanzania Tusajigwe Erio highlighted language as a barrier to improving raising awareness and improving health seeking behaviours in communities, indicating that there is no word for RHD or RF in Swahili.
Participants also heard presentations from qualitative studies conducted by researchers at UCT. Dr John Lawrenson spoke on the possibilities of engaging patients using social media, in relation to a study in which researchers interview children and young adolescents due to undergo heart surgery. Meanwhile the research of Dr Jantina de Vries, Marlyn Faure and Olivia Matshabane addressed the effect of genetic attribution on stigma relating to RHD, and the potential of visual media to improve the relationship between researchers and study participants.
The afternoon’s presentations were concluded by Amy Verstappen, who spoke on the potential for collaboration between the RHD and congenital heart disease communities, and Dr Liesl Zühlke who praised rheumatic fever week in South Africa as a fantastic initiative for raising awareness around RHD.
The day concluded with a discussion of recommendations and next steps that can be drawn from the event. Main themes agreed on by the group include the need for a model capturing the non-medical patient journey of RHD to ensure the patient voice is heard throughout the clinical journey; partnership among the broad range of RHD researchers to foster mixed methods approaches; centrality of monitoring and evaluation in the work we conduct; and a platform for ongoing discussion on these topics, including a repository of global research and their published and unpublished learnings. These themes will be captured in a published report detailing our commitment to ensuring that the patient voice is at the heart of how we tackle RHD.