Dr Bethan Page, Lecturer in Child Health and Palliative Care, and Dr Dee Fields, Research Assistant, have begun work on two exciting projects at the Centre of Excellence in Children’s Palliative Care at King’s College London, which is funded by Kentown Support, led by Professor Lorna Fraser.
These projects aim to build a robust evidence base to improve the support and care available to children with life-limiting conditions and their families across the UK.
Project 1: Improving Social Care Support
The first project will explore how social care services can better meet the needs of families.
Parent interviews will capture experiences of accessing and receiving support from social care services and Local Authorities.
Professional focus groups will gather recommendations for improvement. Collaborative workshops will bring together parents and professionals to prioritise the most urgent changes and highlight future research areas.
Project 2: Education and Training for Parent Carers
The second project will explore education and training needs for parent carers of children with medical complexity. These parents often need to learn a wide range of specialist care skills, such as managing feeding tubes or tracheostomies. While training programmes such as the Council for Disabled Children’s Expert Parent Programme and Well Child parent training exist, many parents report feeling underprepared and unsupported.
Building on Bethan’s previous PhD research, this project will:
Work with the parent advisory group to co-design a survey for parent carers
Identify gaps in existing support and training provision
Inform the development of improved, more consistent training resources to better meet families’ needs
Dr Bethan Page commented: “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.”
Both projects represent significant steps toward improving the quality of care and support for families navigating the challenges of life-limiting childhood conditions.
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