Abstract

Introduction: Clinical management of rare diseases often fails to acknowledge the challenges faced by caregivers.
Whilst management of phenylketonuria (PKU) may not be considered as dire as other conditions, most studies
primarily concentrate on clinical issues, dietary adherence, or the quality of life of the PKU patients, leaving
caregivers in the background. The aim of the study was to evaluate the psychosocial effects of PKU on family
caregivers.
Methods: Between October 30th, 2022 and February 28th, 2023, we collected data from caregivers of children
with PKU using an anonymous, self-administered, computer-assisted online questionnaire. The survey was
distributed among to patients during their regular visits to five Polish PKU treatment centers.
Results: A total of 159 Polish caregivers of children with PKU completed the survey. This research shows that
while women caregivers were more likely to be unemployed due to their responsibilities for childcare (50.3%
compared to 0% for men), and men caregivers were more likely to be employed full-time (93.8% compared to
40.6% for women), the former reported higher emotional engagement in caregiving (88.1% vs 56.3% respectively).
Significantly, unemployed mothers reported higher levels of loneliness, helplessness, and emotional
control problems, and lacked psychological/emotional support more often than employed mothers. This research
also shows a statistically significant positive correlation between mothers' education level and financial situation
(p < 0.05) and education level and professional activity (p < 0.01). Additionally, a significant positive correlation
was found between perceived financial situation and feeling of happiness (p < 0.001), and between financial
situation and professional activity (p < 0.001). Finally, a significant positive correlation was observed between
feeling of happiness and professional activity (p < 0.05).
Conclusions: According to our findings, there is a link between subjective happiness, financial situation, and
professional activity among female caregivers. The relationship between these factors goes beyond just the income
earned from work. The results of our study imply that there could even be a therapeutic advantage for
working mothers. It is crucial to recognize the emotional difficulties that employed mothers may experience
while taking care of a child with PKU, and to provide them with the necessary assistance and resources to meet
their needs. Additionally, our results may provide a foundation for redefining the support system for caregivers in
Poland.

Citations

Authors (8)