Experiences of Canadian Parents of Young Children With Cleft Lip and/or Palate

Abstract

Purpose: Prior literature has described the perspectives of parents of young children with clip lip and/or palate; however, few studies have described parents' experiences within a Canadian health care system. This study aims to better understand the experiences of parents of young children with cleft lip and/or palate seen at a Canadian tertiary care center and identify their care needs.

Design: In-depth semistructured interviews.

Setting: Pediatric tertiary care center.

Participants: Parents of children younger than 7 years of age with cleft lip and/or palate.

Results: From 14 interviews, 4 themes were identified. The diagnosis theme was associated with reactions, timing, and search for information. Key concerns within the theme of physiology and function were around feeding and speech. The health care experience theme included burden of care, peripheral hospitals and services, the cleft lip and palate clinic, and clinicians. The psychosocial theme included parents' reactions to their child's pain, coping strategies, family interactions, and school/day care experiences. Parents felt care could be improved by having: access to good information and community speech therapists, shorter appointment wait times, a peer support network, and increased cleft knowledge within their child's school and peer groups.

Conclusions: The experience of parents of children with cleft lip and/or palate is complex but can be organized into 4 themes. Clinics may consider suggestions offered by parents to improve care. Future work should address parents' needs and aim to create a parent-reported quality-of-life measure specific to parents of young children with cleft lip and/or palate.

Keywords: cleft lip and/or palate; patient-reported outcomes; qualitative interviews.