Parental Experiences and Health Education Perceptions Raising Children with Orofacial Clefts

Congenital abnormalities, such as cleft lip and/or palate (CL/P), are a significant global public health issue that contribute to newborn morbidity and mortality, difficulties in social integration, psychological problems for affected persons, parents, and families. Available health education information and resources on CL/P care for parents and families in Ghana are however minimal. The purpose of this qualitative study was to explore the health education perceptions of parents of children born with CL/P to identify and understand experiences of common psychosocial challenges, potential risk, and protective factors used by parents. Five research questions were designed to examine the health education and psychosocial experiences of parents and caregivers in Ghana using the socioecological model (SEM) as the theoretical framework. Semi-structured interviews were conducted with a sample of 21 participants consisting of parents and caregivers of children aged between 0-12 years born with CL/P. Iterative manual coding, continuous member checking and triangulation was used for thematic data analysis. Emergent themes consisted of health education gaps and needs in cleft care, sociocultural stigma and psychosocial challenges, social challenges in educational and community settings, and lack of support facilities, organizations, and government policies. This research highlights the need for comprehensive health education and support at all levels of the SEM to improve healthcare and educational services for affected parents and families. This research is significant for the formation of positive social change through multi-agency partnerships that would enhance the knowledge and well-being of affected parents and caregivers to promote a more inclusive society in Ghana.