Funded Research Projects
Funding high-quality research is vital to improving care for children with life-shortening conditions and their families. It helps us strengthen and shape our own programme delivery, while contributing valuable learning to the wider children’s palliative care sector.
As part of the Kentown Support funded Centre of Excellence in Children’s Palliative Care at King’s College London, Dr Bethan Page has begun work on two exciting new research projects. Together, these projects will build the evidence needed to develop more effective, responsive support, both through our programmes and across the sector.
Project 1: Improving Social Care Support
This project aims to understand parents and professionals’ priorities and recommendations for improving social care support for children with life-shortening conditions.
The project will involve:
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Interviews with parents to capture experiences of accessing and receiving support from social care services and Local Authorities.
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Focus groups with professionals will gather recommendations for improving social care support.
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Workshops with parents and professionals will identify and prioritise the most important changes needed to improve social care for children with life-limiting conditions, as well as highlight areas for future research.
Project 2: Education and Learning for Parent Carers
This project will explore education and training for parent carers. Parents of children with medical complexity often need to learn a wide range of specialist care skills such as managing feeding tubes or tracheostomies. While some training programmes exist (for example, the Council for Disabled Children’s Expert Parent Programme and WellChild parent training), many parents report feeling underprepared and unsupported.
This project will build on Bethan’s previous PhD work to understand what additional education and training resources are needed.
We will work with our parent advisory group to design a survey for parent carers which will help identify the gaps in support and inform the development of better, more consistent training to meet families’ needs.
Dr Bethan Page,
Lecturer in Child Health and Palliative Care
Dr Lucy King,
Research Associate in Palliative Care and Child Health
Dr Anna Roach,
Lecturer in Child Health and Palliative Care
There has been hardly any research in social care for children with life-limiting conditions and services are often not fit to meet the needs of children and families. Children with disabilities are entitled to social care support under UK law, but services are often inconsistent and not well adapted to children with life-limiting conditions. We are looking forward to working with parents and professionals to explore how we can improve support for children and families.