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.

Parental Education About Stigma And Discrimination In Cleft Lips And Palate Patient: Community Empowerment

“…When a community perceives a health condition as "appropriate punishment" for violating a cultural norm, they lack empathy for the condition of the people affected. This finding, therefore, corroborates previous research which has argued that cultural beliefs about health conditions or illnesses can lead to prejudice and social exclusion from stigmatized people (Kimotho & Macharia, 2020).…”

“…Social stigma places these children at an additional disadvantage in education, work, and marriage. This stigma and discrimination can arise from family members, friends, community members, health workers, and even from family, in this case, parents (internalized stigma) (Kimotho & Macharia, 2020).…”

Clinical Profiles of children born with Orofacial Clefts: Results from Fourteen East African Countries

“…Cleft lip and palate (CLP) deformities have widely been neglected, despite having a significant impact on the lives of patients and their families. This is of particular concern in the SSA setup where the disease is associated with spiritual wrath and societal stigmas (8). The Smile Train and other collaborators' initiative is bringing children out of the perceived veil of suppressed seclusion and educating communities that this is not a spiritual problem, but a correctable defect requiring surgical intervention.…”