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Abstract
Levels of parenting stress in parents/caregivers of children with phenylketonuria (PKU) and factors associated with stress levels were evaluated, using the Parenting Stress Index-Short Form, in this study. Participants were parents and children with PKU who attend the University of Washington PKU Clinic in Seattle, Washington. This study was able to describe some of the factors associated with parenting stress in parents of children with PKU, which included lack of social support, age of the child, challenges in managing care of the child and compliance with the dietary treatment regimen. Social support, when defined as exclusively from family and friends, and Phe levels of the child were found to be not statistically significant in overall parenting stress. The observed trend of increased parent stress with age is, unexpectedly, contrary to the assumption that parenting stress reduces as the child develops autonomy in self-care. Costs associated with PKU and social support were statistically significant in specific subscales or domains of the PSI-SF. Although the small study sample limits the ability to generalize these findings beyond Washington State, results from this study will be informative to the UW PKU Clinic and benefit their clientele. A national, multi-center trial that addresses parental stress in parents/caregivers of children with PKU is still needed in order to meet the end goal of optimal PKU management.
