Maternal Perspectives: Qualitative Responses About Perceived Barriers to Care Among Children With Orofacial Clefts in North Carolina

Objective: To examine maternal perceptions of barriers to care of children with orofacial clefts (OFC) in a population-based survey that solicited open-ended qualitative responses. Design and Setting: In 2006, a combination mail/phone survey was sent to all mothers of children with OFC. The questionnaire included 76 items. A final open-ended question was included for additional information about cleft-related care. The analysis included responses to the open-ended question and sociodemographic characteristics of the respondents. Qualitative responses were transcribed and entered into a qualitative software package for analysis, and common themes were elucidated. Participants/Patients: The North Carolina Birth Defects Monitoring Program was used to identify all resident infants born with OFC from 2001 to 2004. Of 478 eligible mothers, 52.9% (n = 248) responded to the survey, and 39.5% (n = 98) responded to the final open-ended question. Main Outcome Measures: Percentage reporting problems accessing care, frequency of positive and negative comments, and indicators of financial, personal, and structural barriers to care. Results: Of the 98 respondents, the majority (n = 95, 96.99%) were the biological mother. Almost 40% of mothers indicated that accessing primary craniofacial care was a problem. Of those citing perceived barriers to care, the major issues cited were financial, structural, and personal barriers. Conclusions: Collaborative efforts between craniofacial centers and teams, health care systems, and birth defects registries are warranted to reduce perceived barriers to care among families of children with OFC. Further exploration of the themes and factors associated with barriers to care and services is needed.