Quality of life among parents of children with phenylketonuria (PKU)

Abstract

BackgroundParents of children with chronic conditions are known to be at risk of impairment in their quality of life (QoL). Studies considering other chronic conditions proposed diverse factors to have an impact on the parent’s QoL. So far, there has been little research on parents who have a child with phenylketonuria (PKU). This study was designed to evaluate the parental quality of life (PQoL) of parents of children and adolescents who have PKU and identify possible predictors of PQoL.MethodsIn this cross-sectional study 89 parents completed self-report measures of PQoL, family stress, social support, and parental coping. To determine the impact of these potential predictors on PQoL, regression and mediation analyses were performed.ResultsMost parents coped well with their children’s metabolic disorder. Family stress (β = −0.42; p < 0.001) and perceived social support (β = 0.33; p = 0.001) were proven to be the most powerful predictors, accounting together for 45% of the variance of PQoL. Social support mediated the association between family stress and PQoL.ConclusionsThe current study indicates that parents of younger children are an especially vulnerable group. Members of health-care teams should be able to identify and empower vulnerable parents to seek and maintain social support.

Treatment Adherence and Psychological Wellbeing in Maternal Carers of Children with Phenylketonuria (PKU)

“…Increased resilience was also associated with reduced psychological distress in the present study. In contrast to earlier studies (Fidika et al 2013;Ten Hoedt et al 2011), caregivers' psychological distress was not associated with their perceived social support in the present study. In the present study, level of dependency on the caregiver for dietary adherence was not associated with level of psychological distress.…”

“…Although it correlated with parenting stress difficulty, it was not a significant predictor when entered with other variables. In addition, child age and caregiver wellbeing were not significantly associated, which is congruent with Gundaz et al (2015), but not with other studies reporting an association between child age and parental quality of life (Fidika et al 2013;Ten Hoedt et al 2011).…”

“…Parents have to supervise their child's nutritional intake and facilitate regular sampling of blood phe concentrations (Smith et al 1993). Given the effort required for treatment adherence and the consequences of poor compliance, caring for a child with PKU brings additional challenges (Awiszus and Unger 1990) that potentially affect parental wellbeing, with increased depression and anxiety reported in some parents of children with PKU (Gundaz et al 2015;Mahmoudi-Gharaei et al 2011), but not others (Fidika et al 2013;Kazak et al 1988;Ten Hoedt et al 2011).…”

“…Fidika et al (2013) found parental quality of life (QoL) was predicted by family stress and perceived social support, whilst Ten Hoedt et al (2011) noted that health-related QoL was affected by emotional support and loss of friendship. Whilst QoL was lower for parents with younger children due to greater parental responsibility for dietary adherence, Gundaz et al (2015) found that parental anxiety and depression were not associated with child age.…”

Findings from qualitative studies suggest parents of children with disabilities benefit from peer support; whereas findings from quantitative studies are inconclusive

“…However, peer support can mediate parents’ stress response 2. Peer support can be a valuable additional resource for parents and can meet their information and support needs through meeting other parents in a similar situation who are willing to share their experiences.…”