Social stigma and cultural beliefs associated with cleft lip and/or palate: parental perceptions of their experience in Kenya

Abstract

Cleft lip with or without cleft palate (CL/P)—a condition associated with speech, hearing, feeding, and dental problems, as well as anomalies of the bone and soft tissue around the mouth—is a common birth defect around the globe. The prevalence of this condition varies widely across different countries and regions, and is apparently highest among Asians and lowest among Africans. A review of literature reveals that there exists a dearth of information on experiences of parents of children with CL/P and stigma communication, as well as cultural beliefs associated with CL/P in Africa. To fill this gap, we conducted a descriptive qualitative study examining the experiences of parents of children with CL/P, stigma communication, and cultural beliefs associated with CL/P in Kenya. Twenty four in-depth interviews were done involving purposefully sampled parents of children born with CL/P at AIC CURE International Hospital in Nairobi, Kenya. Five overarching themes emerged under the lived experiences of parents of children with CL/P: Emotional experiences; relational experiences; burden of care and concerns; reaction by the public and friends; and source of social support. The stigma messages and beliefs associated with CL/P further exacerbated the stigma. The study revealed that stigma communication associated with CL/P remains a significant source of social and psychological anguish to parents and guardians of children with CL/P. These findings have critical implications for the management of stigma communication associated with CL/P. They point to the need for public awareness campaigns on CL/P to demystify the condition, its causes and treatment. The study shows that raising public awareness of CL/P would go a long way towards addressing the stigma associated with the condition. It underscores the need for open communication and engagement with all stakeholders to manage stigma communication associated with CL/P through culturally appropriate anti-stigma campaigns.