Solutions for stigma and sustainable access to care for cleft lip and palate
Cleft lip and/or palate (CL/P), where the upper lip is divided at birth and can continue into the hard palate, is one of the most common congenital abnormalities worldwide. This condition affects one in 700 live births globally and is most common in Asia with 1 in 500 live births. Untreated, CL/P can lead to difficulties feeding, breathing, speaking, and hearing, but CL/P can be treated successfully through reparative surgery. Unfortunately, increased cleft lip risk has been found to disproportionately impact those with indicators of lower socioeconomic status, including lack of prenatal care and lower maternal education, and those living in low-resource areas face geographic and economic barriers to quality care access.
Stigma compounded with a lack of access to the resources needed to care for an infant with CL/P contributes to the number of infants who become orphaned due to their anomaly, particularly in underserved regions. This is in part driven by a lack of available knowledge on the etiology of the condition, especially since cultural beliefs and myths surrounding CL/P continue to persist in Asian and African countries. A study conducted in Kenya on social stigma associated with CL/P found that 19.4% of surveyed individuals believed that CL/P was a result of “evil spirits,” while 46.1% reported not knowing the cause of the cleft. These beliefs were found to contribute to increased prejudice, social exclusion by mothers, and decreased social support from other community members.
Symbolic stigma—the passing of negative moral judgment tied to a chronic health condition—towards children with CL/P and their families was commonly seen in studies among populations in China, Kenya, and Nigeria. Stigma often acts as a barrier to healthcare, and symbolic stigma has been previously studied and tackled in chronic conditions such as HIV/AIDS and epilepsy. Stigma for a health condition is frequently present at a number of levels and settings: institutional, interpersonal, community, and intrapersonal, all of which require targeted approaches for mitigation.
Stigmatized health conditions need to be disassociated from the negative moral valence misattributed to them. Common sources of stigma towards health conditions exist, particularly in underserved regions; thus interventions for health-related stigma have broad applications. Internalized stigma manifesting in feelings of guilt or shame can act as a barrier to healthcare. Stigma on the community level often takes the form of blame and social isolation, which can continue through institutional employment disadvantage. Successful prior interventions in low-resource areas include utilizing community healthcare workers to bring awareness to the existence of stigmatizing attitudes. These individuals can additionally provide families with needed healthcare resources and emotional support, and provide the community with knowledge on CL/P and options for care. Such interactions with community-based workers also decrease social isolation and trends of social exclusion.
The mitigation of stigma needs to take place concurrently with a sustainable increase to access to care. Making stigma reduction a priority is a critical step towards global health equity, which many fail to recognize.
Edited by: Sanjana Anand
Graphic Designed by: Libby Gough
Chung, Karen Y, et al. “The Impact of Social Stigma for Children with Cleft Lip and/or Palate in Low-Resource Areas: A Systematic Review.” Plastic and Reconstructive Surgery. Global Open, Wolters Kluwer Health, 28 Oct. 2019, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6846294/#:~:text=There%20are%20still%20children%20with,exacerbated%20by%20barriers%20to%20care.
Kimotho, Stephen Gichuhi, and Fiona Nduta Macharia. “Social Stigma and Cultural Beliefs Associated with Cleft Lip and/or Palate: Parental Perceptions of Their Experience in Kenya.” Nature News, Nature Publishing Group, 15 Dec. 2020, https://www.nature.com/articles/s41599-020-00677-7.
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