Coproduction in the management of individuals with cleft lip and palate in South Africa: the Ekhaya Lethu model

OBJECTIVE: Cleft lip and palate (CLP), one of the most common congenital anomalies of the craniofacial complex, has a worldwide prevalence rate of 1 in 700 live births. In South Africa, a middle-income country, the CLP prevalence rate is 0.3 per 1000 live births in the public health sector. The complexity of the condition requires that individuals with CLP be treated by a multi-disciplinary team of health professionals, with the integral involvement of caregivers and families. METHODS: Between 2015 and 2018, we conducted a cross-sectional study entitled: The epidemiology and care of individuals with cleft lip and palate in South Africa, in fulfilment of a Doctor of Philosophy degree. The study setting consisted of 11 specialized academic centres (nine central hospitals and two specialized dental hospitals) that are situated in six of South Africa’s nine provinces. The study used a combination of quantitative and qualitative methods and consisted of four distinct but inter-linked components. The first component consisted of a record review of CLP data over a 2-year period to determine the prevalence of CLP in the public sector of South Africa. The second component consisted of a survey of the leaders or heads of the health care teams in the 11 specialized centres to determine the current approach to CLP care provision. The third component consisted of a survey among CLP team members to measure inter-professional collaboration. The fourth component consisted of interviews with parents or caregivers on their perceptions of health service provision and support for children with CLP. We draw on the findings of this large empirical study on CLP in South Africa’s public health sector and the theory and principles of health care service coproduction to present the Ekhaya Lethu model for the management of CLP. RESULTS: The conceptual design of Ekhaya Lethu derives from the findings of each of the study components. We describe the possible application of the model in the coproduction of health care to examine the roles, relationships and aims of the multidisciplinary team in CLP management. We highlight both the implications and challenges of coproduction in the care and management of CLP for multidisciplinary health teams, the caregivers and families of individuals with CLP, and for health managers and policy makers. CONCLUSION: The proposed Ekhaya Lethu model introduces a discourse on coproduction in the design and implementation of quality health care to individuals with CLP in South Africa and other low-and middle-income countries.