Situational analysis of dietary challenges of the treatment regimen for children and adolescents with phenylketonuria and their primary caregivers

A situational analysis was conducted to evaluate challenges with the treatment regimen (a low protein diet and special supplemental formula) for children and adolescents with phenylketonuria (PKU) and their caregivers. A semistructured interview was administered to 19 caregivers and 11 children with PKU to describe formula and dietary problems and their frequency, difficulty, and affective intensity. Information was also gathered on attempted solutions to problems and their perceived effectiveness. Caregivers who rated dietary problems as less frequent, difficult, and emotionally upsetting and strategies as more effective for solving problems had children with significantly lower phenylalanine (Phe) levels, a biological indicator of adherence (i.e., better adherence; all p values <.05). Caregivers who reported using strategies coded as representing an authoritarian parenting style to solve dietary problems were significantly more likely to have lower household incomes and older children with higher Phe levels than were those who did not report such strategies (all p values <.05).