PKU: Parenting experiences and wellbeing
Research type
Research Study
Full title
An investigation of parenting experiences, psychological well-being and treatment adherence for parents of children with PKU.
IRAS ID
171668
Contact name
Emma Medford
Contact email
Sponsor organisation
University of Manchester
Duration of Study in the UK
0 years, 7 months, 1 days
Research summary
Phenylketonuria (PKU) is a rare genetic disorder. People with PKU cannot eat foods high in protein as this can cause brain damage. Parents of children with PKU must make sure that their child sticks to a low protein diet. They must also send regular blood tests to check their child’s levels of the amino acid Phenylalanine (Phe). These things take a lot of effort and this may be stressful for parents. However, we don’t know much about what it is like to look after a child with PKU. This study will look at parents’ experiences of caring for a child with PKU, their mood and stress levels, and some of the things that influence this. We will also look at some of the things that help parents and children stick to a low protein diet. We hope that this will help us find out how best to support parents to improve their mood, reduce their stress, and help their child stick to the recommended diet.
This project has two components. For both components, parents/carers will be recruited from three PKU clinics in the UK. For component 1, primary caregivers of children with PKU up to the age of 16 will be asked to fill in some questionnaires. These will look at their mood, stress levels, resilience, social support and the care dependency of their child. We will also look at their child’s blood Phe levels, using their existing medical records, to see how much they have stuck to a low protein diet. For component 2, primary caregivers of children under the age of 2, diagnosed with PKU by newborn screening will be interviewed about their experiences of parenting a child with PKU.
REC name
North West - Greater Manchester Central Research Ethics Committee
REC reference
15/NW/0454
Date of REC Opinion
24 Jun 2015
REC opinion
Further Information Favourable Opinion