Caring for a Child with a Cleft Lip and/or Palate: A Narrative Review

Abstract

Raising a child with healthcare needs places additional demands on caregivers. In 2012, Nelson and colleagues authored a review of 57 papers pertaining to parents’ experiences of caring for a child with cleft lip and/or palate (CL/P). Thanks in large part to this review, available literature on this topic has grown considerably. The aim of the present review was to update and critically appraise recent literature, with the wider goal of assessing progress in the field and setting recommendations for future work. All original, peer-reviewed articles pertaining to the psychological adjustment of parents of children with CL/P living in high-income countries (published May 2009 to May 2024) were examined. A total of 126 articles were included. Findings were narratively synthesised according to three salient themes: Emotional Impact; Social Experiences; and Care Delivery. Recent research has built on Nelson et al.'s recommendations, addressing some prior gaps in knowledge. Nonetheless, some areas remained largely unexplored and critical methodological limitations were still evident. Recommendations for clinical practice include: improved informational resources for parents and non-specialist health professionals, regular audit of services in collaboration with parents and families, routine psychological screening for known risk factors and integrated psychological support from diagnosis onward. Recommendations for future research include the design of multicentre, prospective, longitudinal studies with sufficient sample sizes and appropriate control/reference groups, inclusion of families from diverse ethnic and socioeconomic backgrounds, further examination of factors contributing to psychological growth, the development and evaluation of psychological interventions, and cross-condition learning.