Exploring Intolerance of Uncertainty in CF patients and their parents
Research type
Research Study
Full title
Exploring the Prevalence and Intergenerational Relationship between Parent and Adolescent Intolerance of Uncertainty when the Adolescent has Cystic Fibrosis.
IRAS ID
271836
Contact name
Hannah Rettie
Contact email
Sponsor organisation
University of Bath
Duration of Study in the UK
0 years, 11 months, 30 days
Research summary
‘Intolerance of uncertainty’ (IU) describes an individual’s struggle to cope with feelings of uncertainty. Previous research has shown that IU is common amongst people who have difficulties with their mental health, for example in depression, anxiety and eating disorders.
IU is less well explored within children and adolescents, individuals with long-term health conditions, and parents of those who are experiencing difficulties. The current project aims to address some of these gaps by exploring IU within young people with cystic fibrosis aged 12-24 and their parents.
This project focuses on cystic fibrosis because it is a genetic disease that presents individuals and their families with a wide range of physical and emotional difficulties. Interviews with individuals who have cystic fibrosis and their parents have identified that uncertainty surrounding daily life, treatment access and the future is a significant worry for families. It therefore seems relevant to explore IU within this population. The project also aims to explore the relationship between IU and a number of psychological factors (i.e. anxiety and depression). The findings will help us better understand the experiences of both young individuals who have cystic fibrosis and their parents, and may help develop interventions that can support these families.
The project will recruit from a number of Cystic Fibrosis centres in South West England and South Wales. The study will involve both individuals with cystic fibrosis aged 12-24 and their parents completing questionnaires measuring their 'Intolerance of Uncertainty', anxiety and depression. The questionnaires will take approximately 15-20 minutes to complete, and families will be given a £5 voucher as a thank you for their time.
REC name
North of Scotland Research Ethics Committee 1
REC reference
19/NS/0191
Date of REC Opinion
12 Dec 2019
REC opinion
Favourable Opinion