Fathers of Children Born with Cleft Lip and Palate: Impact of the Timing of Diagnosis

Author's final draft after peer reviewINTRODUCTION: Cleft lip and/or palate (CL/P) affects not just the child born with the condition but also the child’s parents. Prior research has been primarily cross-sectional, quantitative, and focused on mothers’ emotional, social, and care experiences. Fathers’ experiences have been neglected despite the important role fathers have in their child’s well-being and development. The purpose of this study was to examine how the timing of a child’s diagnosis (prenatal versus postnatal) affects how fathers cope and adapt. METHOD: We conducted a descriptive qualitative study with a convenience sample of 17 fathers and used thematic content analysis to code the interviews. The sample included ten fathers who received a prenatal diagnosis and seven who received a postnatal diagnosis. RESULTS: The following four major themes emerged: (1) first hearing the diagnosis, (2) taking care of a baby with cleft, (3) future concerns, and (4) reflections. Course of treatment, feeding and social stigma were reported as major sources of stress for all fathers. DISCUSSION: All fathers should be routinely assessed by CL/P treatment teams and included in support services. Some fathers whose babies were diagnosed at birth experienced self-blame, suggesting the importance of screening this group of fathers for distress at birth. Findings underscore the importance of family-centered approaches to care that include both mothers and fathers in treatment planning, interventions, and future research.University of Delaware. School of Nursing