Barriers to Care for Children with Orofacial Clefts in North Carolina

Details

• Alternative Title:
  Birth Defects Res A Clin Mol Teratol
• Personal Author:
  Cassell, Cynthia H. ; Strassle, Paula ; Mendez, Dara D. ; Lee, Kyung A. ; Krohmer, Anne ; Meyer, Robert E. ; Strauss, Ronald P.
• Description:
  Background
  
  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.
  
  Methods
  
  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-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.
  
  Results
  
  Of 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.
  
  Conclusion
  
  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.
  
  
• Subjects:
  Appointments And Schedules Child Child, Preschool Cleft Lip Cleft Palate Female Health Knowledge, Attitudes, Practice Humans Infant Male Mothers Questionnaires Registries Retrospective Studies Time Factors

  More +
• Source:
  Birth Defects Res A Clin Mol Teratol. 2014; 100(11):837-847.
• Pubmed ID:
  25200965
• Pubmed Central ID:
  PMC4507417
• Document Type:
  Journal Article
• Funding:
  IVV7/Intramural CDC HHS/United States ; U50/CCU422096/PHS HHS/United States
• Place as Subject:
  North Carolina
• Volume:
  100
• Issue:
  11
• Collection(s):
  CDC Public Access
• Main Document Checksum:
  urn:sha256:0f471865e28982c5484af697c238c0bacc1417771cfed25116f2222f270ce4c6
• Download URL:
  https://stacks.cdc.gov/view/cdc/32225/cdc_32225_DS1.pdf
• File Type:
  [PDF - 547.92 KB ]