The relation between family empowerment and metabolic control and adherence to treatment plans in children with phenylketonuria

Background: Nowadays, parents remarkably contribute to the education, training and treatment of their children with advanced disabilities. Considering the financial restrictions, changing the values and the social norms governing the society, it can be argued that besides their major roles, parents are also responsible for fulfilling their children’s specific needs. The joining of these different roles is called empowerment which reflects the parents’ active role as well as a sense of control over themselves, the child and the family. The current research studied the impact of family empowerment on controlling the phenyl level and adherence to treatment plans in children with phenylketonuria in Fars province.

Methods: This research was a correlational study. The research tools included Koren family empowerment scale, demographic data inventory, blood phe level check-list, and adherence to treatment programs which were filled in by 80 families. The data was analysed by means of SPSS20 software and correlation test.

Results: the findings of the study showed a significant  relationship (P<0.01)between family’s empowerment and metabolic control (r=0.724), and commitment to treatment programs (r=0.527). Moreover, a 45-percent empowerment variation was explained by the mothers’ education.

Conclusion: Family empowerment explained the family attitude, knowledge and behaviour in the domain of family’s relation with children, services and society, which can be considered as a psychological source to support the children with metabolic deficiencies and advanced disabilities.