Found in translation: navigating uncertainty to save a child's heart. Paediatric cardiac surgery in Cape Town, South Africa.

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'.

A first qualitative snapshot: cardiac surgery and recovery in 10 children in the Red Cross War Memorial Children's Hospital, Cape Town, South Africa (2011-2016).

This article describes our qualitative research on the follow-up of 10 children, 5 years into recovery after cardiac surgery. The research was driven by a multi-disciplinary team of medical anthropologists, cardiologists, and an intensive care specialist and was based at the Red Cross War Memorial Children's Hospital where they underwent surgeries. The research sought to answer two questions; first, could we successfully maintain contact with and follow up the children; the second - which will be answered in future papers - asked what life was like for them and their families during surgery and later recovery. The results are presented as a discussion on the themes that arose in our engagement and analysis and not as clinical evidence. These showed that elective surgery although significantly delayed was successful, and all children were followed up at their medical appointments. The researchers, however, were unable to establish follow-up with all families over the duration of the study. In the final round of interviews in the respondents' homes, of 10 children, we remained in contact with seven. The discussion argues that effective communication and access to these children was often compromised by their coming from the poorer communities in the Cape Town metropolitan region, making them even more vulnerable during their recovery periods.

Perceptions and knowledge of voluntary medical male circumcision for HIV prevention in traditionally non-circumcising communities in South Africa.

Voluntary medical male circumcision (VMMC) has been recommended for the prevention of HIV transmission, particularly in sub-Saharan Africa. Uptake of the campaign has been relatively poor, particularly in traditionally non-circumcising regions. This study evaluates the knowledge, attitudes and practices of medical male circumcision (MC) of 104 community members exposed to promotional campaigns for VMMC for five years. Results show that 93% of participants have heard of circumcision and 72% have heard of some health benefit from the practice. However, detailed knowledge of the relationship with HIV infection is lacking: 12.2% mistakenly believed you could not get HIV after being circumcised, while 75.5% believe that a circumcised man is still susceptible and another 12.2% do not know of any relationship between HIV and MC. There are significant barriers to the uptake of the practice, including misperceptions and fear of complications commonly attributed to traditional, non-medical circumcision. However, 88.8% of participants believe circumcision is an acceptable practice, and community-specific promotional campaigns may increase uptake of the service.

Understanding of genetic inheritance among Xhosa-speaking caretakers of children with hemophilia.

Hemophilia A and B are X-linked recessive inherited bleeding disorders that have a profound impact on the family of affected individuals. Education is vital to enable women to appreciate the implications of being a carrier and the implications for a prospective child. Prior research has shown that cultural, socio-economic and linguistic issues in South Africa are major barriers to communication for first-language Xhosa-speakers. This exploratory study aimed to investigate the basic knowledge of genetic inheritance among this cultural group in order to promote culturally-sensitive, effective genetic counseling. Ten in-depth interviews were conducted with Xhosa-speaking mothers or caregivers of boys with hemophilia. Results suggest that the participants had a very limited understanding of the clinical management, genetic consequences and cause of hemophilia. While treatment and care by health care service providers was fully accepted, several participants believed that traditional methods would provide them with more satisfactory explanations. These findings suggest that there is a critical need for socio-culturally tailored, language-specific education for families with hemophilia.

Medical students' experiences of professional lapses and patient rights abuses in a South African health sciences faculty.

PURPOSE: To elicit South African medical students' experiences of witnessing patient rights abuses and professional lapses during their clinical training in order to inform an appropriate and effective response. METHOD: During June and July 2009 at the University of Cape Town Faculty of Health Sciences, the authors surveyed 223 fourth-, fifth-, and sixth-year medical students in selected clinical rotations concerning abuses they had observed. Volunteers were later interviewed individually. The authors coded interview transcripts for key themes using a constant-comparative grounded theory approach. RESULTS: Of 223 students surveyed, 183 (82%) responded, 130 (71%) of whom reported witnessing patient rights abuses and professional lapses, including physical abuse (38%), verbal abuse (37%), disrespect for patients' dignity (25%), and inadequately informing patients about their treatment (25%). Students attributed abuse to stressed health workers, overburdened facilities, and disempowered patients. Most students who witnessed abuse (59%) did not actively respond, and 64% of survey respondents felt unprepared or uncertain about challenging abuses in the future. Interviews with 28 students yielded detailed accounts of the abuses witnessed and of students' emotional reactions, coping strategies, and responses. Most students did not report abuses; they feared reprisal or doubted it would make a difference. CONCLUSIONS: This study demonstrates the disjunction between what these students were taught about human rights and ethics and what they witnessed in clinical settings. The high prevalence of patient rights abuses experienced by these students highlights the need to align medical ethics and human rights with medico-legal protocols in theory and clinical practice.

Teaching biopsychosocial competence and the principles of primary health care (PHC) at the patient's bedside

The importance of behavioural and social determinants in health was recognised long ago; yet we still grapple with the challenges of developing appropriate teaching pedagogies to bring these principles into routine clinical practice. A teaching pedagogy blending the biopsychosocial appro- oach and the principles of primary health care (PHC); as expressed in the Alma-Ata Declaration of 1978; is lacking in the literature. This report hopes to address this need.In 1994 the University of Cape Town (UCT); South Africa; adopted a PHC-based approach to health sciences education to equip its graduates with the necessary knowledge; skills and attributes required to meet the challenges of providing health care in a country with vast socio-political inequalities. This paper describes an educational pedagogy which weaves these principles into clinical practice in an undergraduate medical clerkship. The methodology uses real patient encounters linked to an interactive seminar and a portfolio of case studies.Students described the teaching pedagogy as interesting and informative. They recognised the importance of holistic; patient-centered care based on a biopsychosocial approach and the importance of the PHC principles. Barriers to implementing this approach were also highlighted. The pedagogy; in use for four years; is being adopted by another department; indicating the sustainability and success of the course

Relationships, trust, decision-making and quality of care in a paediatric intensive care unit.

OBJECTIVE: To assess the care-giving practices of health-care practitioners in the paediatric intensive care unit (PICU) through their qualitative insights, reflections and experience in participatory action research. DESIGN AND METHODS: Qualitative research in the form of 'participatory action research' was used to gather data from three sources within the unit: focus groups within disciplines, observations within the PICU, and semi-structured interviews. All staff members were active collaborators and equal stakeholders in the decision-making process, research and feedback. SETTING: The paediatric intensive care unit (PICU) of the Red Cross War Memorial Children's Hospital (RCWMCH). PARTICIPANTS: All staff members from various disciplines working in the PICU. RESULTS: Staff members described problems with respect to relationships, trust and decision-making within care-giving practices. CONCLUSION: The study qualitatively describes how poor communication amongst staff members in respect of relationships and decision-making impacted on trust and how this tended to compromise care-giving practices in the PICU. The data suggested that this was more evident in informal rather than formal clinical decision-making procedures. The strength of the study was that the participatory action design in the research allowed staff members to address the very dynamics that they themselves cited as problematic.

Common mental health problems in historically disadvantaged urban and rural communities in South Africa: prevalence and risk factors.

This paper reports on an epidemiological study of common mental health and substance abuse problems in a historically disadvantaged urban and rural community in South Africa. In the rural Limpopo Province of South Africa, and in a peri-urban township near Cape Town, self-report instruments were used in two random population samples and among respondents at primary care and traditional healer settings, to assess common mental health problems, substance abuse problems and associated problems in social functioning. A high prevalence of mental health and substance abuse problems was observed in both communities, with highest rates in the peri-urban township. Even higher prevalences were found among respondents at primary health care or traditional healers. The study shows that mental health and substance abuse problems constitute a considerable burden of disease among disadvantaged communities in South Africa. The study further underscores the integral role of traditional healers in the mental health care system.