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Mothers Report Perceived Barriers to Accessing Care: Report

Posted on May 28, 2012

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 Journalreports 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 percent 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.

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