Effectiveness of a Community-Based Health Literacy Program on Caregiver Awareness and Adherence to Home Management Among Children with Phenylketonuria

Abstract

Background: Implementing community-based health literacy programs is essential to enhance caregivers’ awareness and adherence to home management practices, thereby supporting improved health outcomes among children with phenylketonuria (PKU).
Aim: This study aimed to evaluate the effectiveness of a community-based health literacy program on caregiver awareness and adherence to home management practices among children with PKU. Methods: A quasi-experimental research design was utilized. The study was conducted through community health centers and follow-up clinics affiliated with the Genetics Clinic of Assiut University Children’s Hospital, Assiut Governorate, Egypt. A purposive sample of 50 caregivers of children diagnosed with PKU was recruited and randomly assigned to study and control groups. Three tools were used for data collection: a structured interview questionnaire, a caregiver awareness assessment questionnaire, and a home management adherence scale. The intervention group participated in a structured community-based health literacy program, whereas the control group received routine health education and follow-up care.
Results: At baseline, no statistically significant differences were observed between the study and control groups regarding demographic characteristics, caregiver awareness, or home management adherence, confirming baseline comparability. Following program implementation, caregivers in the study group demonstrated significantly higher awareness scores than those in the control group (p ≤ 0.001). Significant improvements were also observed in dietary management, correct administration of metabolic formulas, regular blood phenylalanine monitoring, and follow-up attendance (p ≤ 0.001). A strong positive correlation was identified between caregiver awareness and home management adherence (r = 0.724, p = 0.001). These improvements were sustained during the three-month follow-up.
Conclusion: The community-based health literacy program effectively improved caregiver awareness and adherence to home management practices among children with PKU.