Psychosocial well‐being of parents of children with oral clefts

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 wellbeing of parents of affected children. Methods The study included a total sample of 287 parents (171 mothers, 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 wellbeing.

Oral health‐related quality of life in young Cambodian children: a validation study with a focus on children with cleft lip and/or palate

“…Dental examinations were undertaken following World Health Organization guidelines and caries recorded using the DMFT index—no child in the sample was caries free. The ‘severe caries’ category referred to those children in the study who had one tooth or more pulpally involved using the PUFA index for the clinical consequences of untreated caries. The final category was ‘dentine caries’ which included all remaining children, of whom none were caries free.…”

“…To date, the quality‐of‐life reports in the literature of people with CLP have used a variety of instruments and a range of age groups. A number of studies have been in adolescent age groups and/or used case–control research designs and some have also assessed the parental and/or family impacts but again using differing instruments which impedes accurate comparisons being made. The Child Oral Health‐Related Quality‐of‐Life (COHQoL) suite of instruments was developed to assess OHRQoL in children from a very young age through to adolescence.…”

Whole genome sequencing of orofacial cleft trios from the Gabriella Miller Kids First Pediatric Research Consortium identifies a new locus on chromosome 21

“…Orofacial clefts, primarily cleft lip (CL) and cleft palate (CP) are among the most common birth defects in all populations worldwide with differences in birth prevalence by ancestry (1, 2). Surgical treatment along with ongoing orthodontia, speech and other therapies, are very successful in ameliorating the physical health effects of OFC, but there is still a significant social, emotional and financial burden for individuals with OFC, their families, and society (3, 4). Furthermore, there are disparities in access to such therapies for OFCs (5), similar to other malformations with complex medical and surgical needs.…”

Cleft-Related Infanticide and Abandonment: A Systematic Review of the Academic and Lay Literature

“…The financial and emotional burden of caring for a child with special needs can be enormous, particularly on families already strained by poverty (Pinheiro, 2006;Hibbard et al, 2007;Hendricks et al, 2014). Thus, the potential impact of government and nongovernmental organizations that support families with a child with special needs may be significant (Kuhlthau et al, 2005;Nidey et al, 2016). Lastly, healthcare systems might adopt active postpartum care initiatives to ensure that affected women, who may be withdrawn and not seek care, find the care that they and their child with an oral cleft require (Porter and Gavin, 2010).…”