CONGENITAL HEART DISEASE AND NEURODEVELOPMENTAL DISORDERS IN CYP V1
Research type
Research Study
Full title
ADOLESCENTS' EXPERIENCES OF CO-OCCURRING CONGENITAL HEART DISEASE AND NEURODEVELOPMENTAL DISORDERS: AN INTERPRETATIVE PHENOMENOLOGICAL ANALYSIS
IRAS ID
338391
Contact name
Tabitha West
Contact email
Sponsor organisation
Teesside University
Clinicaltrials.gov Identifier
https://doi.org/10.17605/OSF.IO/7DPZ6, Registration with Open Science Framework
Duration of Study in the UK
1 years, 2 months, 26 days
Research summary
Neurodevelopmental disorders (NDDs) such as autism and ADHD are common in those with congenital heart disease (CHD). While studies have investigated what it is like for children and young people (CYP) to live with CHD and NDDs separately, no research to date has looked at CYPs' experience of living with both CHD and a NDD. The research project therefore aims to answer the following question: How do adolescents experience the impact of CHD and autism and/or ADHD on their lives?
Participants will be recruited via 4 streams. 1) Purposive sampling through involved clinicians in the Paediatric Cardiology Department (PCD) at the Freeman Hospital (Newcastle-upon-Tyne Hospitals NHS Foundation Trust). Clinicians will identify service users that meet eligibility criteria and provide them with an information sheet outlining the purpose of the study and what participation will involve. These clinicians will have no further involvement in project recruitment. 2) Purposive sampling through online advertisement via the North East and North Cumbria CHD Network and the Children's Heart Unit Fund. 3) Volunteer sampling through online advertisement via the researcher's social media channels - 'X' and 'LinkedIn. 4) Purposive sampling through advertisement via posters on the walls of PCD at the Freeman Hospital.
Adolescents (between 11-17 years old) with 1) CHD, and 2) autism and/or ADHD, and whose CHD is managed in the community will be eligible to participate. Individuals will not be eligible to participate if they are receiving inpatient, palliative, or end of life care.
Participants will be invited to take part in a semi-structured interview, either at the Freeman Hospital, their home, or via Microsoft Teams. They will also be given the option to bring a photograph/drawing that illustrates their lives with CHD and a NDD, which will be used to build rapport and scaffold conversation. Interviews are expected to take approximately 45 minutes.
REC name
Yorkshire & The Humber - Leeds West Research Ethics Committee
REC reference
24/YH/0078
Date of REC Opinion
15 May 2024
REC opinion
Further Information Favourable Opinion