Through the eyes of children, young people and families - Evaluation of the model of care delivered by WellChild Nurses
Total value of project
Professor Jane Coad (PI) CFR; Nicky Ashley, CFR; Charlotte Clowes, CFR; Joanne Kelly, CFR; Professor Mark Whiting, University of Hertfordshire; Sean Graham, CELE; Theresa Pengelly, CFR; David Widdas, South Warwickshire Foundation Trust
WellChild/Linda Partridge and Team, South Warwickshire NHS Foundation Trust, University of Hertfordshire, Children and Families Research Team (CFR)
Coventry and Warwickshire Partnership Trust
Duration of project
01/07/2013 - 05/01/2015
The WellChild Nurse has been developed by the WellChild charity to support children, young people and families with complex care needs who require specialist care, and is in many cases the key worker in meeting their specialist needs both in hospital and within their homes. The project carried out a longitudinal evaluation, underpinned by innovative multi-methods. Using a framework drawn on the participatory techniques of Appreciative Inquiry, the project has gained an in-depth understanding and evidence for the first time of the WellChild Nurses as key workers and how this role is perceived by children and their families.
The programme of WellChild Nurses has now grown with a total of 17 posts being funded throughout the UK in 2014, with a further six posts to be funded in 2015 increasing the total number of WellChild posts to 24 across England, Scotland, and Wales.
The evaluation of specialist nursing provision by WellChild (dedicated to enabling children to be cared for at home) from 2013-2015 (‘Through the eyes of children, young people and families'), led to a number of changes and new initiatives at WellChild including changing reporting structures from feedback on nurses’ experience, to demonstrating how they made a difference. A new focus by WellChild nurses on training families to be able to support their children at home, has allowed more children to leave hospital and be cared for at home. This caring role of families had previously been underestimated until made more visible by Professor Coad’s research.1 This training activity has been made a UK-wide nursing initiative through a training summit with NHS England which looked at what families needed and led to new training principles launched by WellChild in July 2018 and further training conferences in Manchester and Edge Hill to address the complexity of service provision and commissioning. The WellChild Family Tree was launched in 2014, this is a free to join peer support network that connects families caring for children with exceptional health needs across the UK, through online and face to face groups. Families acknowledge the benefit of this network: “You are never alone. There will always be someone else in the WellChild Family Tree to offer advice and support.”2
The ‘Through the eyes’ research project focused attention on the 24/7 nature of caring for young people with palliative and complex care needs and the caring role of families when nurses aren’t present. This underpinned the launch of #notanurse_but, which is a parent-driven campaign that aims to shine a light on the reality of life behind closed doors for these families. Its goal is to gather evidence and highlight to decision makers the gaps in support that currently exist and need to be filled.1
The nursing model used by WellChild and informed by Professor Coad’s research is having broader influence on other types of nursing in cancer or cystic fibrosis for example. In addition, the work is feeding into service provision developments via the National Confidential Enquiry into Patient Outcome and Death, and the Queen’s Nursing Institute project on transition of care. Professor Coad’s appointment as chair of the WellChild advisory board has also transformed practice, with new working groups set up on data and interpretation, 24/7 care and emotional resilience and more engagement with national drivers.
1 WellChild statement from Linda Partridge, Director of Programmes, WellChild.