Illness perceptions in patients with congenital heart disease
Research type
Research Study
Full title
Illness perceptions and beliefs in patients with congenital heart disease
IRAS ID
298543
Contact name
Joanna Brooks
Contact email
Sponsor organisation
University of Manchester
Clinicaltrials.gov Identifier
https://osf.io/af92c/, Open Science Framework (OSF)
Duration of Study in the UK
1 years, 3 months, 0 days
Research summary
Different people with the same illness can hold quite different beliefs about their condition. Illness beliefs are important because they affect how people respond to and manage their symptoms, as well as other important quality of life and psychological outcomes. If we can identify unhelpful illness beliefs (which are associated with more distress, anxiety and poorer self-management), we can develop interventions to help address these and improve outcomes for patients.
Congenital heart disease (CHD) is a condition that affects the heart and is present from birth. CHD requires lifelong follow-up at a specialist centre. Although there is evidence suggesting that illness beliefs are important in CHD, there is little understanding about the specific beliefs of people living with CHD.
In this study we will explore and identify the illness beliefs held by patients with a clinical diagnosis of CHD. Participants will need to be over the age of 20 years old, have been diagnosed with CHD during their early years (3-5 years old) and they will need to attend follow up appointment at a specialist centre for CHD. During this study, we will interview with patients about their beliefs about their CHD. These interviews will be held in person at the University of Manchester or at the patient's home address. Interviews can also be conducted virtually via telephone, Zoom or Microsoft Teams. Patients will be asked to give one interview that will last around 45 -60 minutes.
The findings from this study will help to understand what it means to live with CHD. In future studies, this information will be used to draft a CHD specific version of an existing questionnaire measure of illness beliefs (the Illness Perceptions Questionnaire - Revised; IPQ-R), which health care professionals can then use to assess illness beliefs in CHD.
REC name
North West - Greater Manchester West Research Ethics Committee
REC reference
22/NW/0370
Date of REC Opinion
11 Jan 2023
REC opinion
Further Information Favourable Opinion