Young people’s experiences of neurodevelopmental and heart problems
Research type
Research Study
Full title
Experiences of neurodevelopmental difficulties in young people with congenital heart disease
IRAS ID
277877
Contact name
Richard House
Contact email
Sponsor organisation
Teesside University
Duration of Study in the UK
0 years, 10 months, 6 days
Research summary
The research wants to get an understanding of what it is like to be a person aged 8-18 who has a congenital heart disease (CHD) and neurodevelopmental difficulties (NDD). In the past research has thought about what NDDs young people with a CHD might have but this has not really asked young people (YP) what is going on for them. The presence of YP’s voices in the literature remains limited; it is unknown specifically what makes a difference to their quality of life without generalising, furthermore we cannot anticipate important factors that may be found e.g. how they feel about and manage their NDDs, or how they understand their difficulties without hypothesising. Qualitative approaches can offer insight and information to appreciate YP’s individuals perspectives. Therefore, if we want to inform, plan and provide effectively responsive services tailored to YP’s needs, it is important without assumption, we understand; what they understand, their experiences of NDDs, and what they feel would be helpful if they wanted any help, this knowledge is currently lacking from the literature. Participants will be given a camera for one week and asked to take pictures of their daily lives, these photos will then be used as prompts in an interview with the researcher. It is hoped the use of photos will ensure to ground the interview in participant’s experiences and support their engagement in the interview. The interviews will be audio recorded, transcribed and analysed using interpretive phenomenological analysis (IPA). IPA is a form of qualitative analysis, using a ‘line-by-line’ approach in which the interviewer finds themes and difference in the transcription; which aims to make sense of and understand individual’s experiences. YP will be recruited from the Medical Psychology and Paediatric Cardiology Clinics at James Cook University Hospital.
REC name
North East - Newcastle & North Tyneside 2 Research Ethics Committee
REC reference
20/NE/0280
Date of REC Opinion
28 Jan 2021
REC opinion
Further Information Favourable Opinion