The perceived impact of having a sibling with congenital heart disease
Research type
Research Study
Full title
To understand the perceived impact on children and young people of having a sibling with congenital heart disease.
IRAS ID
276418
Contact name
Elizabeth Jean Bichard
Contact email
Sponsor organisation
London South Bank University
Duration of Study in the UK
0 years, 10 months, days
Research summary
This research study intends to generate a better understanding about experiences and adjustment of children and young people who have a sibling with congenital heart disease (CHD). This is important because there is not enough research in this area, so our understanding of what life is like or how we can support siblings of children with CHD is limited. The research project is split into two phases. Phase One involves interviews with siblings, recruitment of which will happen through charitable organisations. Therefore, Phase One of this study does not require an IRAS application, HRA approval or NHS ethics and is being considered by the university ethics board in a separate application.
Phase two is the subject of this application: Phase two involves siblings completing the sibling perception questionnaire (SPQ) which helps to measure siblings’ responses to their brother or sisters heart disease. There are four sub-scales relating to sibling adjustment and these are: interpersonal relationships, intrapersonal responses, fear and communication about the illness. Information from SPQ in addition to interview data will be pulled together to help us gain a broader view into this area. This is particularly useful when there isn’t much research which has already been done and aids exploration on the topic.REC name
North of Scotland Research Ethics Committee 2
REC reference
20/NS/0051
Date of REC Opinion
25 May 2020
REC opinion
Further Information Favourable Opinion