Everyday life with a Fontan circulation
Research type
Research Study
Full title
Everyday life with a Fontan circulation: understanding the lived experiences of adults in their 20s and 30s
IRAS ID
316738
Contact name
Nigel Drury
Contact email
Sponsor organisation
University of Birmingham
Duration of Study in the UK
1 years, 8 months, 31 days
Research summary
Little is known about the quality of life and experience of daily life in adults living with a Fontan circulation, a treatment for patients who are born with a heart that has only one rather than two functioning pumping chambers. In this study, we will conduct interviews with adults aged 20-39 living with a Fontan circulation in the UK to explore their lived experiences. Specifically, we will look to understand their meaning of quality of life, what limitations and/or struggles they experience in everyday life, and what customised social and clinical support they require or would like to receive. A focus group will be conducted to inform the direction of the interviews, which will be conducted via Zoom, transcribed, and analysed. By understanding how living with a Fontan circulation affects patients during adulthood, both physically and mentally, we will add to the limited literature in this area and improve the design and conduct of future clinical trial interventions.
REC name
London - Camden & Kings Cross Research Ethics Committee
REC reference
22/LO/0853
Date of REC Opinion
9 Dec 2022
REC opinion
Favourable Opinion