How mothers of children with orofacial clefts view barriers to accessing care

Cleft Palate–Craniofacial Journal — When a child is born with an orofacial cleft, a family may face medical, financial, and cultural trials. Knowing how parents perceive their ability to access needed care for a child born with birth defects can help formulate solutions. A survey of North Carolina mothers examines barriers to support and services.

Cleft Palate–Craniofacial Journal reports findings from this survey in the May issue. Mothers responded to questions about barriers to care, including an open-ended question to offer further insight. This study is a qualitative analysis of this population, based on a statewide birth defects registry.

Two hundred forty-eight mothers of children 0 to 6 years of age with orofacial clefts responded to the survey. Almost 40% of the mothers reported problems accessing primary craniofacial care. Geographical factors, lack of referrals, experiences with stigmatization, and concerns about confidentiality are some of the barriers that these mothers perceived.

The themes that emerged in this study were financial, structural, and personal barriers to care. Lack of health insurance or low Medicaid reimbursement rates can create financial obstacles to care. The structure of the health-care system or psychosocial problems can be defined as structural and personal barriers.

To address these issues and help parents to achieve a positive view of their experiences, the authors recommend well-coordinated care and communication between service providers and families. Training and continuing education for health-care professionals could help them understand parents’ views and specific needs. Health insurance companies, health departments, craniofacial and cleft teams and centers, and birth defect registries can collaborate with families and existing health-care systems to offer identification and referral of these children to the services that can best meet their needs.

Full text of “Maternal Perspectives: Qualitative Responses About Perceived Barriers to Care Among Children With Orofacial Clefts in North Carolina,” Cleft Palate–Craniofacial Journal, Volume 49, Number 3, May 2012, published by Allen Press, is available by clicking here.

About Cleft Palate–Craniofacial Journal
The official publication of the American Cleft Palate–Craniofacial Association (ACPA), the Cleft Palate–Craniofacial Journal is a bimonthly international, interdisciplinary journal on craniofacial anomalies. The journal explores and reports on the study and treatment, including experimental and proven surgical procedures, of cleft lip/palate and craniofacial anomalies. It also keeps readers in touch with the latest research in related laboratory sciences. To learn more about the society, please click here.