This medical humanities paper describes our qualitative research into pathways to care and informed consent for 10 children who had cardiac surgery in the Red Cross War Memorial Children’s Hospital, Cape Town, South Africa. Our multidisciplinary team consists of cardiologists, anthropologists, a social scientist and a general practitioner in two sites, South Africa and Australia. This paper builds on our first publication in a specialist cardiology journal on a ‘qualitative snapshot’ of these children’s life stories from 2011 to 2016 but turns to the medical humanities to explore a concept of ‘uncertainty’. Data analysis revealed that for the children’s parents and doctors, ‘uncertainty’ underscored procedures. Indeed, the literature review showed that ‘uncertainty’ is intrinsic to heart surgery and was integral to Barnard’s first heart transplant in Cape Town in 1967. We demonstrate that in meeting the challenges inherent in the ‘uncertainty dimension’, doctors established greater ‘medical certainty’about each operation. This happened as they encountered the difficult clinical and biopsychosocial factors that were fundamental to the diagnosis of children’s cardiac defects. It was doctors’ translation of these decision-making processes that informed parental decisions and described why, despite feelings of uncertainty, parents signed consent. To visually describe heart surgery in this locality we asked the South African photographer, Guy Neveling to record some children undergoing echocardiograms and surgery. These photographs qualitatively demonstrate what medical certainty entails, and parents’ trust in doctors and surgeons, whom they knew had ‘reasonable certainty’ that their child’s ‘heart is worth saving’.
- medical anthropology
- medical humanities
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Contributors I am the guarantor of this article and accept responsibility as the lead author and founder of the research project for the work and conduct of the study. I acknowledge and thank my medical colleagues and health professional staff for their significant contribution to this work. The significant contribution of the ten children’s parents, families and friends to the research process and for contributing to and giving consent for allowing us to place this information on our social media websites is sincerely and gratefully appreciated. The children in particular are commended and acknowledged for contributing their stories to what we hope will mean cardiac care and surgery for many others in poorer parts of the world.
Funding The National Research Foundation of South Africa. Emerging Researcher Award: University of Cape Town.
Competing interests None declared.
Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.
Patient consent for publication Parental/guardian consent obtained.
Ethics approval The authors assert that all procedures contributing to this work comply with the ethical standards of the Helsinki Declaration of 1975, as revised in 2008, and were approved by the Human Research Ethics Committee, Faculty of Health Sciences, University of Cape Town and the Red Cross War Memorial Children’s Hospital, Ethics Committee, Cape Town, South Africa. This included collecting the case studies of 10 children who had heart surgery and engaging in their long-term follow-up in a complex investigation which included photographic evidence and children’s stories being placed in social media, that is permission to get consent for photographic evidence and engaging parents on a web-based platform (HREC.355.2011/DOH.02.11.2011).
Provenance and peer review Not commissioned; externally peer reviewed.
Data availability statement Data are available upon reasonable request. No data are available. The databank is currently unavailable for public open access as it has not been appropriately filed and coordinated. When this has been done it will be available. Data are available on our social media websites on FaceBook and on the web at www.braveheartfoundation.org and this can be used if referenced and acknowledged.