{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,4]],"date-time":"2026-08-04T01:09:21Z","timestamp":1785805761074,"version":"3.56.0"},"reference-count":31,"publisher":"Wiley","issue":"11","license":[{"start":{"date-parts":[[2014,9,8]],"date-time":"2014-09-08T00:00:00Z","timestamp":1410134400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/100006087","name":"National Center on Birth Defects and Developmental Disabilities, CDC","doi-asserted-by":"crossref","award":["U50\/CCU422096"],"award-info":[{"award-number":["U50\/CCU422096"]}],"id":[{"id":"10.13039\/100006087","id-type":"DOI","asserted-by":"crossref"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Birth Defects Research"],"published-print":{"date-parts":[[2014,11]]},"abstract":"<jats:sec><jats:title>Background<\/jats:title><jats:p>Little 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.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>In 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\u2010wide, population\u2010based 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\u2010square and Fisher's exact tests. Results were stratified by cleft type and presence of other birth defects.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Of 475 eligible participants, 51.6% (<jats:italic>n<\/jats:italic>\u2009=\u2009245) 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 \u201cvery satisfied\u201d with their child's cleft care.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>Although 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. Birth Defects Research (Part A) 100:837\u2013847, 2014. \u00a9 2014 Wiley Periodicals, Inc.<\/jats:p><\/jats:sec>","DOI":"10.1002\/bdra.23303","type":"journal-article","created":{"date-parts":[[2014,9,8]],"date-time":"2014-09-08T14:52:54Z","timestamp":1410187974000},"page":"837-847","source":"Crossref","is-referenced-by-count":36,"title":["Barriers to care for children with orofacial clefts in North Carolina"],"prefix":"10.1002","volume":"100","author":[{"given":"Cynthia H.","family":"Cassell","sequence":"first","affiliation":[{"name":"National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention Atlanta Georgia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Paula","family":"Strassle","sequence":"additional","affiliation":[{"name":"National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention Atlanta Georgia"},{"name":"Rollins School of Public Health, Emory University Atlanta Georgia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Dara D.","family":"Mendez","sequence":"additional","affiliation":[{"name":"Graduate School of Public Health, University of Pittsburgh Pittsburgh Pennsylvania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kyung A.","family":"Lee","sequence":"additional","affiliation":[{"name":"National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention Atlanta Georgia"},{"name":"Northrop Grumman Information Systems Atlanta Georgia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anne","family":"Krohmer","sequence":"additional","affiliation":[{"name":"National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention Atlanta Georgia"},{"name":"University of Minnesota School of Public Health, University of Minnesota Minneapolis Minnesota"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Robert 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