Social functioning and mental health in children with CHD
Research type
Research Study
Full title
Clinically significant correlates of social functioning and mental health in children with congenital heart disease: pilot study
IRAS ID
310010
Contact name
Vicky Elliott
Contact email
Sponsor organisation
Leicestershire Partnership NHS Trust
Duration of Study in the UK
0 years, 5 months, 27 days
Research summary
Background
Many children born with complex congenital heart disease (CHD) live active, happy lives following surgery, but concerns remain regarding long-term outcomes. Some have conditions, (e.g. 22q11.2 deletion syndrome, 22q11DS), associated with learning and mental health difficulties. However, children with CHD unaccompanied by genetic abnormalities may also experience such difficulties. Further, outcomes vary substantially within both groups. This pilot study will investigate the feasibility of a larger study of factors contributing to variability in outcomes. Identifying these will assist services to identify “at risk” children earlier and provide preventive interventions.
Aims
The proposed larger study aims to:
1. Compare social development and mental health in four groups:
-Children with “simple” transposition of the great arteries, a CHD rarely associated with a genetic syndrome
-Children with CHD and 22q11DS, a genetic condition conferring increased risk for developmental and mental health difficulties
-Children with 22q11DS but without CHD
-Children with neither CHD nor 22q11DS
2. Examine how treatments received, child temperament, and family environment interact with CHD and 22q11DS to influence social development and mental health.
The aim of the pilot is to evaluate the feasibility of the larger study with respect to participant recruitment and acceptability of study procedures.
Methods
Five families in each group, with children aged 3-15, will be invited to participate.
Using parental interviews, questionnaires, and review of medical records, we will collect information on children’s:
-Treatment history (e.g. scheduling of operations)
-Development, using structured scales
-Mental health, using parent-completed screening assessments
-Temperament, i.e. early personality
and demands on parents and parenting practices.
Participants will be recruited via clinical staff at the East Midlands Congenital Heart Centre and Leicestershire Clinical Genetics Service. Participation will involve parents completing questionnaires (estimated time required 2 hours) and one interview and one summary/debrief meeting with a researcher (estimated total time 90 minutes).REC name
North West - Greater Manchester East Research Ethics Committee
REC reference
23/NW/0156
Date of REC Opinion
2 Aug 2023
REC opinion
Further Information Favourable Opinion