Adults with CHD- exploring their knowledge of their condition.
Research type
Research Study
Full title
An Exploration of the Views and Experiences of Adults with Congenital Heart Disease (CHD) About Their Knowledge of Their Condition.
IRAS ID
337509
Contact name
Emma Kerr
Contact email
Sponsor organisation
NHS Golden Jubilee
Clinicaltrials.gov Identifier
N/A, N/A
Duration of Study in the UK
1 years, 5 months, 30 days
Research summary
We are interested in learning about the views of adults with Congenital Heart Disease (CHD) about their knowledge of their health condition and their experiences of learning about their condition. Previous research has shown that there is a link between knowledge of one’s health condition and mental and physical health outcomes. To date, no research studies have focused on exploring the views and experiences of adults with CHD in relation to this issue of knowledge about their condition. It is hoped that the views and experiences shared in this study may help to improve our understanding about how best to support people with CHD to understand their condition. This could also help to improve the quality of the care, treatment and services for people with CHD.
We are looking to recruit adults between the ages of 18-30 years old who have Congenital Heart Disease (which was diagnosed in birth or in infancy) and are also attending as an outpatient at the Scottish Adult Congenital Cardiac Service (SACCS), Golden Jubilee University Hospital. Participants will be asked to take part in a research interview via telephone or video call which will last approximately 60-90 minutes. The audio from the interviews will be recorded and the recordings will be transcribed and analysed by the student researcher. The data gathered from the study will be anonymised and stored securely in accordance with NHS Golden Jubilee and University of Glasgow data protection and information governance policies and procedures. The findings will be written up in the form of a thesis and will be submitted to the University of Glasgow as part of the student's doctorate qualification in Clinical Psychology. Participants will be sent a summary of the findings (if they consent) and the findings will be disseminated to clinicians working in the SACCS service.
REC name
London - Camden & Kings Cross Research Ethics Committee
REC reference
24/PR/0197
Date of REC Opinion
19 Mar 2024
REC opinion
Favourable Opinion