ORCHID Annual Report 2024 - Flipbook - Page 12
Phase 2 data collection utilising creative methods in workshops with nurses
responsible for direct care, was completed in May 2024 adapting strategies for
data collection to facilitate recruitment.
We have undertaken multiple workshops, including with children and young
people, which have been co-designed and co-facilitated with Lived
Experience and Charity Partners.
Summary: This study is a qualitative arts-based case study exploring , the
responsive and creative changes made to the delivery of care in nominated
clinical services and patient groups at a specialist children's hospital during
COVID-19, with a community of practiceand nurses involved in the care of
children and families keeping a focus on maintaining compassionate, family
centred and safe care
Our emphasis throughout has been on ensuring our approach is culturally
appropriate, inclusive and accessible. Data from these workshops were
utilised to build a Co-Production FRAMEwork for the main hub development
that is built around the need for: Flexibility in how we work with families,
adequate financial and staffing Resources, a trauma-informed Approach to
what we do, the use of participatory Methods, and provision of safe, familiar
Environments. Three animations highlighting the challenges families face
were also co-designed with families. There is growing agreement that
research should be co-produced with those with lived experience to improve
relevance and impact.
The SPROCKET Study:
Building networks to inform a
systems approach to improving
services for children with complex
disabilities and/or health needs
The FRAMEwork provides a methodology for other research teams to use as
a model for co-production to create awareness of need, advocate for change,
build support networks and ensure an inclusive approach to working with
children and young people with complex disabilities/health needs and their
families.
The Hardest Transition: https://youtu.be/lPeeyf265r8
Why is it a fight: https://youtu.be/hqghf7auazM
A Better Way Is Possible: https://youtu.be/2vUTdK3HoKU
Chief investigator: Professor Christina Pagel, Professor Monica Lakhanpaul
Co-Investigators: Professor Sonya Crowe, Dr Jenny Shand, Dr Kate Oulton,
Professor Jo Wray, Nick Owen, Meaghan Kall, Lily Islam, Lizzie Ngotta,
Catherine Holloway and Jeremy Hilton
Grant funding: NIHR
July 2023 – December 2024
In the UK, children and young people with complex disabilities/health needs
and their families live within a system of health and social care support
networks and pathways that is not fit for purpose. The current system places
8immense pressure9 on families and getting appropriate support is a complex
and combative process. They experience multiple critical transitions, including
between healthcare settings, educational systems, and into adult care or
employment. These transitions are often challenging and can lead to
fragmented care and poorer outcomes if not managed effectively. By adopting
a systems level approach, we aim to co-produce an innovation hub for
delivering feasible, robust and sustainable improvements that will enable these
families to thrive.
The Seen and Be Heard Study
Chief Investigator: Dr Kate Oulton
Co-Investigators: Dr Phillip Harniess, Professor Jo Wray, Professor Faith
Gibson, Professor Anupama Rao, Ms Mary Foo-Caballero, Dr Samantha
Flynn
Grant funding: Great Ormond Street Hospital Charity
October 2023 – March 2026
Every year, like other children, children with Learning Disabilities and/or who
are Autistic receive a cancer diagnosis and start a journey of cancer care.
Some children with Learning Disabilities, such as those with Down
Syndrome, are more likely to get certain cancers, including leukaemia.
12
