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

AboElela, Eman Mahmoud; Hanfy, Miada Mohamed Ali; Moustafa, Khadiga Zain Alabdeen

doi:10.21608/tsnj.2023.285668

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

Document Type : Original Article

Authors

Lecturer of Pediatric Nursing- Faculty of Nursing- Zagazig University, Egypt,

10.21608/tsnj.2023.285668

Abstract

Background: Phenylketonuria is a genetic disorder resulting from lack or inadequacy
of phenylalanine hydroxylase enzyme activity. Caring for and making nutritional
decisions 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 chronic
nature could affect the psychological well-being of both parents and their children
with phenylketonuria. Aim: to assess the struggles and psychological well-being of
parents and their children with phenylketonuria. Subjects & Method: a correlational
descriptive study design was conducted on of 145 parents and their children with
phenylketonuria. Tools: three tools were used to collect the necessary data for the
current study, tool (I): Self-administered questionnaire to collect bio-socio-
demographic data, tool (II): Depression, Anxiety, and Stress Scale, tool (III) The
Strengths and Difficulties Questionnaire. Results: it was found that 17.9%, 29%, and
15.9% 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 problems
respectively. Moreover, 62.8% of the studied children have a negative impact on
different 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 with
phenylketonuria. Behavioral and psychological difficulties facing children with
phenylketonuria affect the psychological well-being of their parents.
Recommendations: further qualitative studies are needed to provide deep insights
into challenges perceived by parents of Phenylketonuria children. Designing and
implementing training programs for parents to improve their coping strategies and
psychological well-being is mandatory