Questionnaire survey of patient families and dental school students regarding non‐syndromic cleft lip and/or palate in the Federal Democratic Republic of Ethiopia

Non-syndromic cleft lip and/or palate (NCL/P) is a congenital craniofacial anomaly with significant psychosocial and economic impacts. In Ethiopia, the prevalence of NCL/P and access to specialized care are not well documented. This study aimed to evaluate the knowledge and awareness of NCL/P among families of affected children and dental school students in Ethiopia and explore their perceptions and attitudes toward NCL/P. From 2009 to 2018, we conducted questionnaire surveys involving 86 patients with NCL/P and their families in the towns of Addis Ababa and Butajira, including 161 students from the School of Dentistry, Addis Ababa University. The surveys assessed the knowledge, perceptions, and attitudes toward NCL/P and their social implications. The majority of patients with NCL/P were born at home and in low-income families. Concerns about the future social life of patients were prominent, with stigma and discrimination reported by 32% of the patients' families. Among the dental school students, 66% had some knowledge of NCL/P, primarily from media sources. Students perceived higher levels of societal blame towards mothers of patients with NCL/P than reported by the patients' families. This study revealed significant gaps in the knowledge and awareness regarding NCL/P among dental school students. It also revealed the substantial social stigma that the patients affected by NCL/P and their families faced in Ethiopia. Enhancing public education and providing comprehensive multidisciplinary care is crucial for improving the quality of life of patients with NCL/P in Ethiopia.