Chloe’s Card | Pausing and hearing
Research type
Research Study
Full title
Chloe’s Card | Pausing and hearing: Towards parent/ child centred and compassionate care in children with congenital heart disease and life limiting illness
IRAS ID
298303
Contact name
Anne-Sophie Darlington
Contact email
Sponsor organisation
University of Southampton
Duration of Study in the UK
0 years, 11 months, 28 days
Research summary
In more recent times, parents have increasingly viewed as the experts of their children, and whilst parents have deep knowledge of this child, the health care professional is the expert with regards to medical and therapeutic management e.g. the cardiologist and the heart. Neither the cardiologist nor the parent can make important decisions regarding that child’s heart without the other. Both are experts on the child in different and very important ways. The challenge of deciding what is the right thing to do, or what is most likely in the child’s best interest is a shared decision and requires both sides to listen and understand the other. When this goes wrong it can lead to significant conflict, which in the extreme results in litigation. Within this study the notion of the expert parent is prominent, although for the context this is used to exploring the experience of communication and decision making, with the purpose of creating an empowerment tool for parents to use, with particular reference to nourishment, when the shared approach may not be working well.
The idea for Chloe’s card has arisen from a lived experience of Chloe’s mother. Chloe died shortly after her 1st birthday, whilst awaiting a liver transplant. Despite Chloe’s Mum extensive experience of nourishing her child, she articulates an experience of disempowerment, disenfranchisement as a person with deep knowledge of her child and felt unheard particularly with reference to feeding. As a parent, she felt strongly, more needed to be done to allow the voice of the parent as someone with deep knowledge to be heard. In partnership with her arose the concept for Chloe’s card, as i) something to empower future parents, ii) prevent others feeling the way they did and iii) to honour Chloe’s legacy as an agent for change.
REC name
East Midlands - Leicester South Research Ethics Committee
REC reference
21/EM/0131
Date of REC Opinion
5 Jul 2021
REC opinion
Further Information Favourable Opinion