Abstract
Objective
Families of children with phenylketonuria (PKU) report child emotional and behavioral problems, parenting stress, and parenting difficulties, which are associated with worse health-related quality of life. This study aimed to examine acceptability and feasibility of a brief, group-based parenting program (Healthy Living Triple P) for families of children with PKU.
Methods
An uncontrolled nonrandomized trial design was used. Families of children aged 2–12 years (N = 17) completed questionnaire measures assessing child behavior and impact of PKU on quality of life (primary outcomes), and parenting behavior, self-efficacy and stress, and children’s behavioral and emotional adjustment (secondary outcomes). Routinely collected blood phenylalanine (Phe) levels were obtained from the treating team. Parents selected two child behaviors as targets for change. The intervention comprised two, 2-hr group sessions delivered face-to-face or online. Assessment was repeated at 4-week postintervention (T2) and 4-month follow-up (T3).
Results
Attrition was low and parent satisfaction with the intervention (face-to-face and online) was high. All families achieved success with one or both child behavior goals, and 75% of families achieved 100% success with both behavior goals by T3; however, there was no change in health-related quality of life. There were moderate improvements in parent-reported ineffective parenting (total score, d = 0.87, 95% CI −1.01 to 2.75) and laxness (d = 0.59, 95% CI −1.27 to 2.46), but no effects on parenting stress or children’s adjustment. Phe levels improved by 6month post-intervention for children with elevated preintervention levels.
Conclusions
Results support intervention acceptability and feasibility. A randomized controlled trial is warranted to establish intervention efficacy.
Analysis of Parenting Stress, Coping and the Quality of Life for the Mother of Children Suffering from Epilepsy