Professional activity, gender and disease-related emotions: The impact on parents' experiences in caring for children with phenylketonuria.

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

SUBMITTER: Walkowiak D 

PROVIDER: S-EPMC10368909 | biostudies-literature | 2023 Sep

REPOSITORIES: biostudies-literature