Phenylketonuria in pregnancy: The emotional impact
Research type
Research Study
Full title
Phenylketonuria in pregnancy: The emotional impact and effects on the developing maternal-infant relationship.
IRAS ID
243280
Contact name
Charlotte Ruth Harris
Contact email
Sponsor organisation
University of Birmingham
Clinicaltrials.gov Identifier
RG-17-237, RG number
Duration of Study in the UK
1 years, 5 months, 30 days
Research summary
To date, most of the research on phenylketonuria (PKU) has focused on the physical impact of the condition and the problems associated with not adhering to the low-phenylalanine (Phe) diet. There has been little research on the psychological impact of living with PKU. Life with PKU can be stressful, as achieving and maintaining metabolic control via diet is difficult. Additionally, many people with PKU describe feeling ‘different’ and appraise this negatively. People with PKU who have elevated Phe levels are at greater risk of depression. During pregnancy, these stressors are magnified as metabolic control must be successfully maintained throughout pregnancy to avoid the unborn child developing ‘Maternal PKU’ (MPKU), which can seriously compromise foetal brain development and subsequent functioning. This study aims to discover what it is like to have PKU whist being pregnant; the emotional impact of PKU during pregnancy and how this affects the developing maternal/ infant relationship. This has not previously been explored. Participants will be recruited from PKU clinics, will be aged between 18 and 45 years and >12 weeks pregnant. They be invited to complete a brief PKU Quality of Life questionnaire and to participate in a semi-structured interview, each lasting approximately 90 minutes, where they will be invited to make images representing themselves, their PKU and their unborn child. They will be asked to talk through this image making process and the connections between the images. Interviews will be audio recorded. Data from these sessions will then be analysed using Interpretive Phenomenological Analysis (IPA). Themes will be extracted and conclusions drawn. It is hoped that a greater understanding of the experiences of women with PKU during pregnancy will help to inform intervention, so that the best possible support can be provided for expectant mothers with PKU and their unborn children.
REC name
West Midlands - Black Country Research Ethics Committee
REC reference
18/WM/0223
Date of REC Opinion
11 Sep 2018
REC opinion
Further Information Favourable Opinion