ORCHID Annual Report 2023 - Flipbook - Page 12
The SPROCKET Study:
Nursing CaRE Study: “Delivery of
business as usual in unusual ways:
compassion and resilience in the
face of adversity"
Building networks to inform a
systems approach to improving
services for children with complex
disabilities and/or health needs
Co-Investigators: Professor Faith Gibson (PI), Professor Jo Wray, Dr Kate
Oulton, Dr Paula Kelly, Tara Kerr-Elliot and James Evans
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.
Grant funding: Burdett Trust for Nursing
April 2022-May 2024
Summary: This study is a qualitative arts-based case study exploring with a
community of practice, and nurses involved in the care of children and
families, 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 focus on maintaining compassionate, family
centred and safe care. The study spans four discrete phases, building on
each previous phase.
Primary Aim: To examine the redesign of services in a specialist children9s
hospital with a view to articulating this experience and providing evidencebased guidance on the potential of nursing services to respond to and
manage change in extraordinary times.
Secondary Aim: To identify how nurses delivered safe and compassionate
family-centered care to vulnerable populations of children, young people and
their families.
Study progress: Phase 1: The community of practice continued to meet and
advise on all study components, their knowledge of nursing practice and
challenges for staff were very valuable in planning and adapting recruitment
strategies. Interviews with senior nurses and was completed at the end of
2023 and analysis of this data was ongoing during 2024. Data collection of
documentary evidence was completed in 2024.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.
To inform the hub development we have built diverse networks and codeveloped ways of working with families from different backgrounds, including
underserved communities. We have undertaken multiple workshops, including
with children and young people, which have been co-designed and cofacilitated with Lived Experience and Charity Partners. 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 FRAMEwork
provides a methodology for other research teams to use as a model for coproduction to create awareness of need, advocate for change, build support
