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

Abstract

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.

Perspectives on the state of cleft lip and cleft palate patient care in Africa

“…isolated cleft palate) can result in delays in diagnosis and deferment of treatment, thereby transitioning CLP from a surgically 'curable' condition to a long-term 'incurable' condition of chronic speech disability [11,21,22]. Caring for a child with a craniofacial deformity may also negatively impact family well being and resources, with resultant fracturing of family subunits [11,23]. Additionally, as children with CLP reach school-age, the social ramifications of an unrepaired deformity can prompt withdrawal from school, placing them at a disadvantage for jobs and predisposing them to a lower socioeconomic status in the future.…”

“…Traditional healers often predominate as the first line source of medical care, particularly in rural regions, and may be less likely to refer a child with CLP to a surgeon [41,42]. Additionally, patient literacy rates vary widely within SSA, with half of caregivers in Nigeria having a secondary education whereas half of caregivers in South Africa are either illiterate or only having a primary school education [15,23,43]. Strategies aimed at raising awareness must take into account the education level and literacy of the local population.…”