ABSTRACT
Raising a child born with cleft lip and/or palate (CL/P) can be challenging for parents. Few researchers have examined how having a child born with CL/P impacts couples. The purpose of this descriptive qualitative study was to examine how a child's CL/P diagnosis affects couples' relational adjustment and coping. We conducted interviews with 17 couples (10 prenatal and seven postnatal) caring for children born with CL/P. After conducting thematic content analysis, six overarching themes emerged: (a) relationship growth, (b) challenges, (c) roles and responsibilities, (d) sources of support, (e) talking about cleft, and (f) lessons learned. Findings suggest that couples should be routinely assessed for psychosocial issues and prevention programs should be tailored to preexisting stressors and timing of the diagnosis.
Subject(s)
Adaptation, Psychological/physiology , Mouth Abnormalities/nursing , Parents/psychology , Social Adjustment , Spouses/psychology , Adult , Female , Humans , Male , Middle Aged , Qualitative Research , Time FactorsABSTRACT
INTRODUCTION: 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 vs. 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 10 fathers who received a prenatal diagnosis and 7 who received a postnatal diagnosis. RESULTS: The following 4 major themes emerged: (a) first hearing the diagnosis, (b) taking care of a baby with cleft, (c) future concerns, and (d) 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. (PsycINFO Database Record
Subject(s)
Adaptation, Psychological , Cleft Lip/psychology , Cleft Palate/psychology , Fathers/psychology , Time Factors , Adult , Child, Preschool , Cross-Sectional Studies , Humans , Infant , Male , Middle Aged , New England , Qualitative ResearchABSTRACT
In this article we describe prior cross-sectional and longitudinal research conducted with children who were born with cleft lip and/or palate and their families in the United States and internationally. The findings and clinical implications from different times and cultures are synthesized using the Biopsychosocial Model. Our primary aim is to summarize the attachment styles, cognitive, psychological and social functioning, self-concept, neurological functioning, and speech difficulties prevalent among individuals who are born with cleft lip/palate at different developmental stages (e.g., infancy, toddler, childhood, adolescence). Additionally, bystander reactions to the speech and appearance of individuals coping with cleft lip and/or palate and its effects on the family are described. Finally we examine the diversity of samples from prior clinical research and provide clinical recommendations for more collaborative family-based practice among medical and mental health providers treating families coping with cleft lip and/or palate.
