Psychosocial well-being of parents of children with oral clefts

Child Care Health Dev. 2016 Jan;42(1):42-50. doi: 10.1111/cch.12276. Epub 2015 Aug 25.

Abstract

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.

Keywords: cleft lip; cleft palate; oral clefts; parent health; parental well-being; psychosocial status.

Publication types

  • Research Support, U.S. Gov't, P.H.S.

MeSH terms

  • Adaptation, Psychological*
  • Adolescent
  • Child
  • Child, Preschool
  • Cleft Lip / epidemiology
  • Cleft Lip / psychology*
  • Cleft Palate / epidemiology
  • Cleft Palate / psychology*
  • Fathers / psychology*
  • Female
  • Humans
  • Infant
  • Infant, Newborn
  • Male
  • Mothers / psychology*
  • Parent-Child Relations*
  • Quality of Life
  • Self Concept
  • Severity of Illness Index
  • Social Support
  • Stress, Psychological*
  • United States / epidemiology