Improving Care for Young People with Long-Term Illnesses and Complex Health Needs

From 2001 to 2020, children and young people in England with life-limiting and life-threatening conditions rose from approximately 33,000 to 87,000. Fortunately, advances in treatments mean that many Children and Young People (CYP) now live for longer and have the comfort to live at home with their families.

Research led by Professor Jane Coad and Team focused on experiences of this group and their carers, to ensure a stronger choice, voice, and better quality of life.

Since 2011 the team used innovative participatory arts-based methods to explore health and well-being for CYP with complex care needs. Coad began work with UK charity ‘Together for Short Lives’ (TfSL) to explore how well services in the West Midlands met palliative care needs for CYP and families. Initial research established a user-informed picture of the issues facing this group, which led to an extensive multi-partner Big Lottery Funding project (2011-2014) to evaluate national provision.

Coad also led an appreciative inquiry (a co-research method enabling stakeholders to explore and self-define care needs). The research indicated that CYP and their families felt medical/nursing needs were well met but provision was needed for broader financial, social and emotional support alongside more responsive specialist therapies. Findings about perceptions of met and unmet health needs of CYP and families were reported to TfSL. The research was described as “pivotal in highlighting the voices of children and their families” by the Director of Research for TfSL. This also underpinned the subsequent project with WellChild, a national charity dedicated to enabling children to be cared for at home via a dedicated nurse network.

From 2013 to 2015 Coad evaluated WellChild’s specialist nursing provision, the recommendations led the charity to shift focus to ‘the families’ perspective’. The caring role of families was found to have been previously underestimated, so nurses began to focus on training families, allowing more children to leave hospital and be cared for at home. This developed into a UK-wide training summit in 2015, supported by NHS England, and new family training principles were launched by WellChild in 2018. The work caught mass media attention on the 24/7 nature of caring for CYP with complex care needs, which led to the launch of ‘#notanursebut’, a parent-driven campaign highlighting the realities of life for these families and identify gaps in support.

This innovative research also informed key publications including the ‘Guide to the Development of Children’s Palliative Care Services’, a critical tool used as an international tool for countries children’s palliative care is less developed.

Simultaneously, the team received commission from Teenage Cancer Trust for a pilot across the Northwest of England. Through feedback from CYP and families, this led to important changes to service provision as well as winning the Nursing Times’ inaugural Prince of Wales Award for Integrated Approaches to Care in 2015.

The significance of the research saw its specialist nursing provision from the North-West pilot increasing their staff from four nurses to 64 to support all young people with cancer in the UK.

Drawing on this work, Coventry University led the first UK rapid review investigating the use of a ‘blended diet’ for CYP fed via a gastrostomy tube, as an alternative to prescribed formula feeds. A controversial and emotive issue for carers, Coventry University and and University of Nottingham (Centre for Children and Young People’s Health Research team) then carried out research with several UK hospices and health trusts. Findings indicated that a blended diet could offer international health benefits, and supported families cultural desire to nurture and feed, but that there was no gold standard to help guide choices.

Coventry’s work unveiled the need for health professionals to support CYP with complex care needs and their families in offering choice, respecting diversity, and enabling their voices.

The research has since been used by NICE, the NHS and many international charities to develop specialist training, enhance resource allocation, and influence policies and guidelines to improve care services. It can now be seen embedded globally, encouraging stakeholders to work together across systems and health care that is user-led, improving health and wellbeing for those CYP with long-term and complex health needs.