Psychosocial well-being of parents of children with oral clefts

• Published in: Child : care, health & development Vol. 42; no. 1; pp. 42 - 50
• Main Authors: Nidey, N., Moreno Uribe, L. M., Marazita, M. M., Wehby, G. L.
• Format: Journal Article
• Language: English
• Published: England Blackwell Publishing Ltd 01.01.2016
• Subjects: Adaptation, Psychological; Adjustment; Adolescent; Age differences; Avoidance behavior; Child; Child, Preschool; Children; Children with disabilities; cleft lip; Cleft Lip - epidemiology; Cleft Lip - psychology; cleft palate; Cleft Palate - epidemiology; Cleft Palate - psychology; Congenital diseases; Family income; Fathers; Fathers - psychology; Fear & phobias; Female; Gender differences; Households; Humans; Infant; Infant, Newborn; Male; Marital status; Mothers; Mothers - psychology; oral clefts; parent health; Parent-Child Relations; parental well-being; Parents; Parents & parenting; Psychological distress; Psychosocial factors; Psychosocial problems; psychosocial status; Psychosocial well being; Quality of Life; Self Concept; Self esteem; Severity of Illness Index; Social Support; Stress, Psychological; Treatment methods; United States - epidemiology; Well being; oral clefts; psychosocial status; cleft lip; cleft palate; parent health; parental well-being
• ISSN: 0305-1862; 1365-2214
• DOI: 10.1111/cch.12276

Background Parents of children with oral clefts may be impacted psychosocially in several ways, but empirical evidence remains relatively sparse. The aim of this study was to identify predictors of psychosocial well‐being of parents of affected children. Methods The study included a total sample of 287 parents (171 mothers and 116 fathers) of children with oral clefts. Parents completed validated psychosocial instruments to measure social avoidance and distress, fear of negative evaluation scale, self‐esteem and interpersonal support. Regression analysis was used to evaluate how selected child, parent and household characteristics relate to psychosocial outcomes focusing on child's cleft type, sex and age, differences between mothers and fathers, marital status and household income. Results Fathers had higher self‐esteem than mothers (P = 0.01) and lower concern of being negatively judged by others (P < 0.0001) but also had lower perception of having someone to talk to about their problems (P = 0.01). High household income was associated with greater self‐esteem and perception of social support (<0.05). Parents of male affected children had greater perception of social support than parents of female affected children (P = 0.04). No significant differences in parental psychosocial status measures were found by cleft type. Similarly, there is little evidence of changes with child age, except for an increase in parental distress and decline in self‐esteem during mid‐adolescence (age 15–17 years). Conclusions The results indicate that mothers and fathers of children with oral clefts may differ in their psychosocial adjustment and that mothers may overall experience more psychosocial problems than fathers. Also, parents from less wealthy households may be at greater risk. Parental psychosocial status should be considered in holistic family‐based treatment approaches to reduce burden on affected families and improve their well‐being.