Development + Wellbeing of Children and Teens with DS and CHD
Research type
Research Study
Full title
Developmental Outcomes and Subjective Wellbeing of Children and Adolescents with Down’s syndrome in combination with Congenital Heart Disease.
IRAS ID
325923
Contact name
Frank Casey
Contact email
Sponsor organisation
Ulster University
Clinicaltrials.gov Identifier
N/A, Project will be pre-registered on OSF Registries once ethical clearance has been received
Duration of Study in the UK
1 years, 11 months, 31 days
Research summary
Background: This study focuses on developmental outcomes and wellbeing of children and adolescents with Down’s syndrome (DS) who also have congenital heart disease (CHD). As shown in previous research, individuals with CHD can face challenges in a range of areas of development (Clancey et al. 2020; Jones et al. 2021). Individuals with DS can face similar developmental challenges (Dieleman et al. 2018; Van Duijn et al. 2010). CHD affects about 40-60% of individuals with DS (Dimopoulos et al. 2023). Despite this, there is little research on how CHD may impact the development and wellbeing of children and adolescents with DS.
Aims: This project aims to address the gap in the existing research by studying the developmental outcomes and wellbeing of children and adolescents with DS in combination with CHD and the impact on their family.
Methods: Two PhD projects will be conducted. One project will focus on children with DS and CHD aged between 5 and 12 years. The second project will focus on adolescents with DS and CHD aged between 13 and 20 years. In both projects, validated psychological tests will be administered to parents/caregivers which assess different aspects of their child’s physical and psychological development. Parent/caregiver’s psychological functioning and the impact on the wider family unit will also be studied using validated, self-report psychological tests. Finally, adolescents with DS will be actively involved in project two where an appropriately adapted and psychometrically validated self-report questionnaire will be administered using an interview style to give adolescents with DS an opportunity to express their own subjective wellbeing.
Importance: The findings could help to further educate clinicians and policy makers of the realities of both being and raising an individual with DS who also has CHD and create care guidelines that are used to support both the individuals and their parents.
REC name
HSC REC B
REC reference
24/NI/0048
Date of REC Opinion
20 May 2024
REC opinion
Further Information Favourable Opinion