A group of qualitative researchers and people living with rheumatic heart disease (RHD) from six countries convened in Cape Town late in 2016 to provide direction for sociological research on RHD to improve care.
People living with RHD shared accounts of the realities of living with RHD while RHD researchers, clinicians and advocates presented a spectrum of qualitative research methods intended to explore people's experiences of living with RHD. The Continuum of Care© (adapted from Medtronic) was used as a theoretical frame to guide participant discussions. Thematic summaries of the discussions were undertaken in an iterative process throughout the workshop.
Three themes emerged in the summaries: there is no 'typical' patient journey; the non-medical patient journey better reflects the reality of patients' lives; a diversity of research methods are required to investigate the experiences of people living with RHD.
Greater understanding was gained for strengthening and expanding the global RHD research agenda guided by qualitative approaches. Future research should reflect on and incorporate the realities of patients' experiences. Healthcare models for chronic conditions need to integrate the experiences of people living with the condition. Use of qualitative methods provides an opportunity to improve such models through revealing deep human experiences.
Qualitative research methods are invaluable for allowing patient 'voices' to be heard. To this end, an incorporation of qualitative approaches should be utilised in all RHD research to ensure maximum benefit for patients.
Patient or healthcare consumer involvement:
Patients were critically involved in the entire process.