Background: The enduring impact of the childhood experiences of people with phenylketonuria (PKU) on their adulthood outcomes is equivocal. As the effect of childhood experiences on adulthood is well documented amongst the general population, the aim of this study was to explore childhood experiences considered significant by women with PKU as they relate to adult experiences and management of PKU, and psychological wellbeing.
Method: Eight women with PKU in South Australia underwent semi-structured interviews. The audio-recorded interviews were transcribed verbatim and analyzed using thematic analysis.
Results: Interviews revealed that feeling different to peers as a child, challenges with management of the condition during adolescence, parental and extended family support, and the perception of PKU as a burden during childhood were associated with adulthood experiences.
Conclusions: Thus, it is proposed that these childhood factors have a combined, long-term impact. These findings have significant clinical implications, suggesting that early psychosocial intervention relating to these identified childhood experiences has the potential to enhance positive outcomes for adults with PKU.