Lived experiences of parents of children with Wolman Disease
Research type
Research Study
Full title
The Lived experiences and wellbeing of parents parenting a child with lysosomal acid lipase deficiency (Wolman Disease): An Interpretative Phenomenological Analysis study.
IRAS ID
270059
Contact name
Anja Wittkowski
Contact email
Sponsor organisation
University of Manchester
Clinicaltrials.gov Identifier
N/A, N/A
Duration of Study in the UK
1 years, 4 months, 0 days
Research summary
The study aims to understand the experiences of parents of children with rare genetic disorder called Wolman Disease (WD) which means that children cannot break down fat from food. This research aims to interview parents and family members of those affected by WD to understand the emotional and physical challenges that they are faced with. Nobody has looked at the experiences of families living with Wolman Disease. This includes how they are able to cope and worries that they hold now or about the future. Therefore, this study will hopefully help to develop support for families to help them cope in daily life.
All parents of children with WD will have the option to take part in the study. The study will take place at hospital or over the telephone. Participants will be recruited from the Royal Manchester Children's Hospital. the study will also be advertised on social media and through charities for participants to volunteer to take part. Participants will be asked to take part in an interview which was last around 90 minutes and also be asked to complete a short questionnaire.
REC name
North West - Greater Manchester West Research Ethics Committee
REC reference
19/NW/0739
Date of REC Opinion
17 Dec 2019
REC opinion
Favourable Opinion