ArticleBirth defects research. Part A, Clinical and molecular teratology2014
Barriers to care for children with orofacial clefts in North Carolina.
Article in Birth defects research. Part A, Clinical and molecular teratology, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers.
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Who cites it
8 citing papers in PubMed.
- Caring for a Child with a Cleft Lip and/or Palate: A Narrative Review.The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association · 2025Review
- Longitudinal psychological well-being in caregivers of young children with cleft lip and/or palate.Journal of pediatric psychology · 2025Article
- Parental knowledge and barriers to cleft lip and palate care: a cross-cultural study from the Middle East and South Asia.Frontiers in public health · 2025Article
- Caregiver-reported barriers to care for children and adults with Williams Syndrome.Journal of community genetics · 2024Article
- Trends in Outcomes and Variation by Race and Ethnicity in Pediatric Plastic Surgery in the United States.Plastic and reconstructive surgery. Global open · 2023Article
- Factors associated with the timeliness of postnatal surgical repair of spina bifida.Child's nervous system : ChNS : official journal of the International Society for Pediatric Neurosurgery · 2016Observational
- Editorial utility of population-based birth defects surveillance for monitoring the health of infants and as a foundation for etiologic research.Birth defects research. Part A, Clinical and molecular teratology · 2015Article
- What we don't know can hurt us: Nonresponse bias assessment in birth defects research.Birth defects research. Part A, Clinical and molecular teratology · 2015Article
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Authors and funding
7 authors.
Funding
Abstract
backgroundLittle is known about the barriers faced by families of children with birth defects in obtaining healthcare. We examined reported perceived barriers to care and satisfaction with care among mothers of children with orofacial clefts.
methodsIn 2006, a validated barriers to care mail/phone survey was administered in North Carolina to all resident mothers of children with orofacial clefts born between 2001 and 2004. Potential participants were identified using the North Carolina Birth Defects Monitoring Program, an active, state-wide, population-based birth defects registry. Five barriers to care subscales were examined: pragmatics, skills, marginalization, expectations, and knowledge/beliefs. Descriptive and bivariate analyses were conducted using chi-square and Fisher's exact tests. Results were stratified by cleft type and presence of other birth defects.
resultsOf 475 eligible participants, 51.6% (n = 245) responded. The six most commonly reported perceived barriers to care were all part of the pragmatics subscale: having to take time off work (45.3%); long waits in the waiting rooms (37.6%); taking care of household responsibilities (29.7%); meeting other family members' needs (29.5%); waiting too many days for appointments (27.0%); and cost (25.0%). Most respondents (72.3%, 175/242) felt "very satisfied" with their child's cleft care.
conclusionAlthough most participants reported being satisfied with their child's care, many perceived barriers to care were identified. Due to the limited understanding and paucity of research on barriers to care for children with birth defects, including orofacial clefts, additional research on barriers to care and factors associated with them are needed.
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