Peer-reviewed article

Caring for A Child with Phenylketonuria: Struggles and Psychological Well- being of Parents and Children

Eman Mahmoud Aboelela, Miada Mohamed Ali Hanfy, Khadiga Z.Moustafa · 1 Feb 2023

Abstract

Background: Phenylketonuria is a genetic disorder resulting from lack or inadequacyof phenylalanine hydroxylase enzyme activity. Caring for and making nutritionaldecisions for a child with phenylketonuria puts a great deal of stress on the parents.Moreover, the financial and psychological burden of the disease as well as its chronicnature could affect the psychological well-being of both parents and their childrenwith phenylketonuria. Aim: to assess the struggles and psychological well-being ofparents and their children with phenylketonuria. Subjects & Method: a correlationaldescriptive study design was conducted on of 145 parents and their children withphenylketonuria. Tools: three tools were used to collect the necessary data for thecurrent study, tool (I): Self-administered questionnaire to collect bio-socio-demographic data, tool (II): Depression, Anxiety, and Stress Scale, tool (III) TheStrengths and Difficulties Questionnaire. Results: it was found that 17.9%, 29%, and15.9% of the participant parents have extremely severe levels of depression, anxiety,and stress respectively. The results also reveal that 64.8%, 59.3%, 53.1%, and 58.6%of the studied children have emotional, conduct, hyperactivity, and peer problemsrespectively. Moreover, 62.8% of the studied children have a negative impact ondifferent areas of their everyday life related to the difficulties they have. Conclusion:the studied parents struggle to provide care and special foods for their children withphenylketonuria. Behavioral and psychological difficulties facing children withphenylketonuria affect the psychological well-being of their parents.Recommendations: further qualitative studies are needed to provide deep insightsinto challenges perceived by parents of Phenylketonuria children. Designing andimplementing training programs for parents to improve their coping strategies andpsychological well-being is mandatory