EMOTIONAL EXPERIENCES AND SOCIAL CHALLENGES OF OROFACIAL CLEFT IN RURAL SUB-SAHARAN AFRICA: A QUALITATIVE INTERPRETIVIST APPROACH.

Background: Orofacial Cleft (OFC) is the predominant congenital facial malformation with an incidence of 1 in 600-700 for every live birth. This unexpected condition often provokes adverse emotional and social reactions from the families and the larger society. OFC optimal management require extensive parental care such as feeding coupled with multiple complex medical, surgical and dental treatment needs which; thus, imposed further strain on the mothers and family carers. Sadly, OFC impacts negatively on many families in rural sub-Saharan African communities signaling an urgent imperative to address this as a public health policy emergency. However, there is scant qualitative data regarding this problem in rural northwest Nigeria. The purpose of this study was to explore the psychosocial lived experiences of family carers of children with OFC in the northwest, Nigeria.

Materials and method: Twenty-two participants from four collaborating tertiary specialised hospitals in northwest Nigeria were recruited into the study between 2017 and 2020. Semi-structured in-depth interviews were conducted and inductive thematic analysis of verbatim transcribed textual data was utilized.

Results: The participants were largely from rural farming districts; mothers constituted more than three-quarters of the participants (n=15). Three major themes emerged: emotional experiences, social challenges and the support system. The study identified covert discrimination and negative stereotypes of children with OFC were identified.

Conclusion: The study findings showed that mothers were emotionally and socially more impacted by OFC.