Evaluation of the impact of parental stress, family health behavior and quality of life on food neophobia in children with phenylketonuria

This descriptive and methodological study aims to determine the effect of parental stress burden, family health behaviors, and quality of life on food neophobia in children with phenylketonuria (PKU) and to evaluate the validity and reliability of the Family Health Behavior Scale (FHBS) for children aged 6-12 years with PKU. A total of 242 volunteer mothers with children aged 6-12 years diagnosed with PKU participated in the study. Data were collected on demographic characteristics, disease management, anthropometric measurements of parents and children, low-protein dietary observations, the impact of the social environment on dietary adherence, and children's blood phenylalanine (phe) levels. Additionally, parents completed the FHBS, the Food Neophobia Scale for Children with PKU, the Parental Stress Scale, and the Healthy Family Scale. The mean age of the parents was 36.6 ± 4.11 years, and the children were 8.5 ± 1.89 years. Among the parents, 25.2% were overweight/obese, and 19.1% of the children were overweight/obese. The confirmatory factor analysis of the FHBS supported its original structure, and the Cronbach's alpha internal consistency coefficient was 0.92. The average FHBS score of the parents was 66.2 ± 7.10. The Food Neophobia Scale results indicated an above-average level of food neophobia in children, with a mean score of 25.21 ± 5.64. The Parental Stress Scale score averaged 34.3 ± 5.03, indicating a moderate level of stress in parents. A negative correlation was found between parents' total FHBS scores and the total Food Neophobia Scale scores for children with PKU (p < 0.01). Conversely, a positive correlation was observed between parents' total FHBS scores and their total Parental Stress Scale scores (p < 0.01). A total of 76.4% of parents reported that their child's special dietary needs made dining out difficult, while 90.9% stated that these needs posed challenges in participating in social events. Additionally, 77.7% expressed frequent concerns about transporting and planning their child's food during travel. This study concluded that the FHBS is a valid and reliable tool for assessing family health behaviors in PKU. Moderate stress levels were observed among parents, and food neophobia was above average in children with PKU. Improvements in parental health behaviors may help mitigate food neophobia in children. The study emphasizes the importance of providing financial and emotional support and ensuring access to care for families managing PKU. Creating awareness and optimizing care by improving access to medical foods and addressing treatment-related costs are essential for all patients with PKU.