‘Listen to my heart’: Qualitative researchers and people living with rheumatic heart disease collaborate to direct future RHD research
Background. Rheumatic heart disease (RHD) is a preventable chronic cardiac condition that causes over 350 000 deaths annually, largely in low and middle-income countries, as a direct result of structural inequalities and inadequate access to comprehensive healthcare. People living with and...
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| Format: | Article |
| Language: | English |
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South African Medical Association
2023-04-01
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| Series: | South African Medical Journal |
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| Online Access: | https://samajournals.co.za/index.php/samj/article/view/974 |
| _version_ | 1827573018375749632 |
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| author | C Read A Mitchell T D Johnson M E Engel O Mathshabane I Ssinabulya A Scheel T Erio J Lawrenson S Perkins J de Vries L Zühlke |
| author_facet | C Read A Mitchell T D Johnson M E Engel O Mathshabane I Ssinabulya A Scheel T Erio J Lawrenson S Perkins J de Vries L Zühlke |
| author_sort | C Read |
| collection | DOAJ |
| description |
Background. Rheumatic heart disease (RHD) is a preventable chronic cardiac condition that causes over 350 000 deaths annually, largely in low and middle-income countries, as a direct result of structural inequalities and inadequate access to comprehensive healthcare. People living with and affected by this disease are a key stakeholder group and need to be directing research priorities.
Objective. To improve care and provide direction for future research, a group of qualitative researchers and pe living with RHD from six countries convened in Cape Town in 2016.
Methods. People with RHD shared their lived experiences while RHD researchers, clinicians and advocates presented a spectrum of qualitative research methods to explore these experiences. The Continuum of Care© (CoC, developed by the Medtronic Foundation) was used as a framework to guide participant discussions. Thematic summaries of the discussions were undertaken in an iterative process throughout the workshop.
Results. Three themes emerged in the summaries: there is no ‘typical’ patient journey; a biomedical focus on RHD does not reflect people’s lived experiences; and a diversity of research methods is required to investigate experiences of people living with RHD.
Practice implications. Qualitative research methods are invaluable for allowing patient ‘voices’ to be heard. To this end, qualitative approaches should be incorporated in all RHD research to ensure maximum benefit for patients.
Conclusion. Greater understanding of the patient journey was gained for strengthening and expanding the global RHD research agenda. Future research should reflect on and incorporate the realities of patients’ lived experiences, and these experiences should be integrated into healthcare models for chronic conditions.
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| first_indexed | 2024-03-08T06:33:25Z |
| format | Article |
| id | doaj.art-7bcf942a5d084143be2f3d2fbdd9903c |
| institution | Directory Open Access Journal |
| issn | 0256-9574 2078-5135 |
| language | English |
| last_indexed | 2024-03-08T06:33:25Z |
| publishDate | 2023-04-01 |
| publisher | South African Medical Association |
| record_format | Article |
| series | South African Medical Journal |
| spelling | doaj.art-7bcf942a5d084143be2f3d2fbdd9903c2024-02-03T11:00:51ZengSouth African Medical AssociationSouth African Medical Journal0256-95742078-51352023-04-01134b10.7196/SAMJ.2023.v113i3b.16851‘Listen to my heart’: Qualitative researchers and people living with rheumatic heart disease collaborate to direct future RHD researchC Read0A Mitchell1T D Johnson2M E Engel3O Mathshabane4I Ssinabulya5A Scheel6T Erio7J Lawrenson8S Perkins9J de Vries10L Zühlke11Telethon Kids Institute, University of Western Australia, Perth, AustraliaCharles Darwin University, Darwin, AustraliaTelethon Kids Institute, University of Western Australia, Perth, AustraliaDepartment of Medicine, Faculty of Health Sciences, University of Cape Town, South AfricaDepartment of Medicine, Faculty of Health Sciences, University of Cape Town, South AfricaUganda Heart Institute, Kampala, UgandaChildren’s National Health System, Washington DC, USAMwanza Intervention Trials Unit, National Institute for Medical Research, Mwanza, TanzaniaDepartment of Paediatrics, Faculty of Medicine and Health Sciences, Stellenbosch University, Tygerberg, Cape Town, South Africa; Division of Paediatric Cardiology, Department of Paediatrics, Red Cross War Memorial Children’s Hospital, Faculty of Health Sciences, University of Cape Town, South AfricaDepartment of Medicine, Faculty of Health Sciences, University of Cape Town, South AfricaDepartment of Medicine, Faculty of Health Sciences, University of Cape Town, South Africa; NeuroScience Institute, University of Cape Town, South AfricaDepartment of Medicine, Faculty of Health Sciences, University of Cape Town, South Africa; Division of Paediatric Cardiology, Department of Paediatrics, Red Cross War Memorial Children’s Hospital, Faculty of Health Sciences, University of Cape Town, South Africa; South African Medical Research Council, Tygerberg, Cape Town, South Africa Background. Rheumatic heart disease (RHD) is a preventable chronic cardiac condition that causes over 350 000 deaths annually, largely in low and middle-income countries, as a direct result of structural inequalities and inadequate access to comprehensive healthcare. People living with and affected by this disease are a key stakeholder group and need to be directing research priorities. Objective. To improve care and provide direction for future research, a group of qualitative researchers and pe living with RHD from six countries convened in Cape Town in 2016. Methods. People with RHD shared their lived experiences while RHD researchers, clinicians and advocates presented a spectrum of qualitative research methods to explore these experiences. The Continuum of Care© (CoC, developed by the Medtronic Foundation) was used as a framework to guide participant discussions. Thematic summaries of the discussions were undertaken in an iterative process throughout the workshop. Results. Three themes emerged in the summaries: there is no ‘typical’ patient journey; a biomedical focus on RHD does not reflect people’s lived experiences; and a diversity of research methods is required to investigate experiences of people living with RHD. Practice implications. Qualitative research methods are invaluable for allowing patient ‘voices’ to be heard. To this end, qualitative approaches should be incorporated in all RHD research to ensure maximum benefit for patients. Conclusion. Greater understanding of the patient journey was gained for strengthening and expanding the global RHD research agenda. Future research should reflect on and incorporate the realities of patients’ lived experiences, and these experiences should be integrated into healthcare models for chronic conditions. https://samajournals.co.za/index.php/samj/article/view/974rheumatic heart disease |
| spellingShingle | C Read A Mitchell T D Johnson M E Engel O Mathshabane I Ssinabulya A Scheel T Erio J Lawrenson S Perkins J de Vries L Zühlke ‘Listen to my heart’: Qualitative researchers and people living with rheumatic heart disease collaborate to direct future RHD research South African Medical Journal rheumatic heart disease |
| title | ‘Listen to my heart’: Qualitative researchers and people living with rheumatic heart disease collaborate to direct future RHD research |
| title_full | ‘Listen to my heart’: Qualitative researchers and people living with rheumatic heart disease collaborate to direct future RHD research |
| title_fullStr | ‘Listen to my heart’: Qualitative researchers and people living with rheumatic heart disease collaborate to direct future RHD research |
| title_full_unstemmed | ‘Listen to my heart’: Qualitative researchers and people living with rheumatic heart disease collaborate to direct future RHD research |
| title_short | ‘Listen to my heart’: Qualitative researchers and people living with rheumatic heart disease collaborate to direct future RHD research |
| title_sort | listen to my heart qualitative researchers and people living with rheumatic heart disease collaborate to direct future rhd research |
| topic | rheumatic heart disease |
| url | https://samajournals.co.za/index.php/samj/article/view/974 |
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