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Jenny S. Ainsworth1,2, Sophie Ainsworth1, Robyn Challinor1, Marie Rowe1, Jennifer Preston1,2 & Simon R. Stones1,3
1RAiISE, Clitheroe, United Kingdom.
2Alder Hey Children’s NHS Foundation Trust Clinical Research Facility, Liverpool, United Kingdom.
3School of Healthcare, University of Leeds, Leeds, United Kingdom.
Things get solved when you become involved: A case study of RAiISE, !
a young person- and family-led research initiative to improve !
education support for young people with chronic conditions
RAiISE is led for and by young people with chronic conditions and their families, with the
support and involvement of healthcare professionals, researchers, teachers and charities (2).
The project was inspired by the negative experiences that young people face while living,
and studying with invisible illnesses, and has led to establishing RAiISE as a non-for-profit
organisation in the United Kingdom.
@RAiISEUK
What is RAiISE?
RAiISE aims to improve the care and experience for young people with invisible illnesses in education. This will be achieved by creating
and disseminating resources to provide education professionals with a portfolio of strategies to use to support their students. RAiISE
will also offer support to young people with invisible illnesses, empowering them to take control of their own health.
๏RAiISE was founded by Sophie
Ainsworth, a young person living with
lupus, who decided that there was a
need to raise awareness of invisible
illnesses in young people.
๏Over an 18-month period commencing
in October 2015, three workshops were
hosted at the NIHR Alder Hey Clinical
Research Facility (CRF) to discuss the
scope of the initiative, which evolved
into prioritising and designing the
components and contents of a future
resource aimed at education providers.
๏NIHR!Alder Hey!CRF supported young
people in organising and hosting user-
led workshops to inform the design
and trajectory of the initiative.
The RAiISE journey
Learnings from RAiISE…
RAiISE is a good example of how user-led research can
be achieved, when young people are supported to
navigate through complex education and healthcare
environments.
CRFs across the UK are well placed to enable and
empower young people to develop their ideas to viable
research initiatives and should ensure that outreach to
young people is embedded within their patient and
public involvement and engagement strategies.
References
1. Health Conditions in Schools Alliance. 2018. Working collaboratively to keep children with medical conditions
safe in school. Accessed 14 February 2018. Available from: http://medicalconditionsatschool.org.uk
2. Ainsworth, S., Ainsworth, J.S., Preston, J., Stones, S.R., Challinor, R. & Rowe, M. 2017. Introducing RAiISE -
Raising awareness of invisible illnesses in schools and education. Pediatric Rheumatology 15(Suppl 2): P113.
www.raiise.co.uk
To address the shortfall in support for young people with chronic conditions in schools (1), !
Raising awareness of invisible illnesses in schools and education (RAiISE) was established to develop
multimedia educational resources to inform and support education providers.
The challenges
!
This initiative has enabled young people, their families
and professionals involved in the care and education of
young people with chronic conditions to be actively
involved in constructing the foundations for rigorously
developed resources to inform future practice within
schools for young people with chronic conditions.