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CURE has a comprehensive approach to providing surgical care for children with disabilities. We support their families and strengthen the capacity of local church and healthcare systems in the countries we serve.

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CURE International is a global nonprofit network of children’s hospitals providing surgical care in a compassionate, gospel-centered environment. Services are provided at no cost to families because of the generosity of donors and partners like you.

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Motivated by our Christian identity, CURE operates a global network of children’s hospitals that provides life-changing surgical care to children living with disabilities.

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CURE International is a global nonprofit network of children’s hospitals providing surgical care in a compassionate, gospel-centered environment. Services are provided at no cost to families because of the generosity of donors and partners like you.

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Plastic and Reconstructive Surgery

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.

Publication: Humanities and Social Sciences Publications
Publication Year: 2020
Authors: Gichuhi Kimotho, S. , Nduta Macharia, F.
Tags
cleft lip
cleft palate
cultural beliefs
disability prevalence
kenya
parental perceptions
pediatrics
social stigma