Illustrating the experience of children and young people cared for in mental health, learning disability and autism inpatient settings
Candace Imison, Associate Director, and Jodi Brown, Senior Stakeholder Engagement Manager, at the NIHR Centre for Engagement and Dissemination, discuss the findings of a new NIHR Themed Review about the experience of children and young people receiving inpatient care in mental health, learning disability and autism units.
The experience of children and young people in inpatient settings for specialist mental health, learning disability, and autism care, is a national concern and policy priority. NHS England established a specialist Taskforce to improve services. The Taskforce made contact with the NIHR CED after reading our Themed Review on “Improving Care by Using Patient Feedback”. We agreed to work together to use our knowledge of patient experience. We looked at how the experience of children and young people receiving inpatient care in mental health, learning disability and autism units could be improved.
NIHR CED shares knowledge and promotes in-depth discussion with the aim of improving health and social care. Our Themed Reviews are an important tool in achieving this aim. They include both academic study and practical wisdom from lived experience and are guided by key stakeholders in the area. As well as searching the scientific literature, for this Themed Review, we consulted children and young people, their parents and inpatient care staff, to see how far the evidence reflected their experience. We also collected information from online resources, audits and online accounts of patient feedback. Our review combines these different strands of evidence to make sense of current knowledge.
Illustrating the topic
To help communicate the findings from the review we have, for the first time, collaborated with Act With Love. Act With Love is an art collective co-founded in 2012 by brothers Joe and Oli Williams. Oli is a sociologist who researches inequality and health, and Joe is a graphic designer. They have worked on a number of health related and other projects, developing graphical representations to ensure findings and evidence are communicated in ways that are accessible and engaging for a diversity of audiences. Together, we produced a set of illustrations to convey some of the key messages from the review. Using illustrations for dissemination is new territory for the NIHR CED. We are keen to try out innovative formats that drive home the central messages, while being accessible and thought provoking. Since this is a new approach for us, we have invited feedback from anyone willing to share their thoughts through an online survey.
Three key action points
The specialist Taskforce set out its ambition, that, “The voice of children and young people, and their family or carers, are embedded in the culture of care, and are taken on board in all decisions about the care that they receive.”
We identified three key action points to support the Taskforce’s ambition:
1. Recognise the interdependence of experience, treatment outcomes, and other factors
Each young person’s experience is unique. Understanding the key influences on a young person’s experience is the foundation of any improvement strategy.
We identified four broad themes: the quality of relationships between young people, their parents,carers and staff; the degree of normality (‘normalcy’) of the experience; the use of restrictive practices; and good clinical outcomes. These themes are interrelated; a young person is unlikely to feel they have had a good experience of care unless they are all present. They could help staff on CAMHS (Child and Adolescent Mental Health Services) units develop methods to capture and monitor a more nuanced understanding of ‘What matters to you?’.
2. Promote timely identification and action to address unmet needs
It is important to use appropriate methods to capture the experiences of young people and their parents,carers, or advocates in real time. It will give them the best chance to identify, intervene and improve the experience.
3. Equip staff with the resources, capacity and authority to improve experience
An individual member of staff can have a positive effect on the experience of a young person. But they rarely have the power to improve experience more widely. Investment in roles with protected time, appropriate resources, improved capacity and authority to act will all be needed for this to happen.
Young people who require specialist inpatient care for their mental health, learning disability, or autism are some of the most vulnerable and at risk in the community. The quality of their experience in care is important for their short and long term wellbeing. This in turn has a significant impact on those who care for them. Young people, their parents, carers and the staff who look after them all want what is best for the young person. It isn’t easy for anyone involved. Perceptions of what is most important may differ and meeting everyone’s needs can be challenging. Understanding each perspective provides valuable insight into how experience, and ultimately outcomes, can be improved.
It isn’t easy for anyone.
The views and opinions expressed in this blog are those of the authors and do not necessarily reflect those of the NIHR or the Department of Health and Social Care.