Hannah joined the Cicely Saunders Institute as a Research Assistant in 2020 working on the Children’s Palliative care Outcome Scale study. She was awarded a National Institute for Health and social care Research Applied Research Collaboration South London Grant in 2021 to undertake a PhD on Implementing the Children’s Palliative care Outcome Scale into routine paediatric palliative care in the UK.
Hannah graduated from York St John University in 2019 with a Bachelor of Arts in Children, Young People and Families and was awarded both the Undergraduate Prorgramme Prize for achieving the highest classification mark on her programme and the Undergraduate Dissertation Prize for achieving the highest mark in her programme for her dissertation on transitions through UK mental health services. Hannah also earned a Masters of Science in Social Policy and Social Research from University College London from which she graduated in 2020.
To ensure a newly developed measure (C-POS:UK) can be successfully implemented, it is important to draw together existing evidence and work collaboratively with key stakeholders to develop an experience-informed, evidence-based Theory of Change.
The STRiDE guidance (1) for Theory of Change Workshops was used to inform the workshops. Parents of children with life-limiting or life-threatening conditions and health and social care professionals working in the NHS were recruited through social media and networks. Theory of Change Maps were developed and refined based on stakeholder contributions using a template adapted from Stories for Impact (2).
Eight multi-disciplinary professionals and eight parents took part in the workshops. Both parents and professionals felt the long-term goal of implementing a measure would be improving care and comfort for children and their families. Professionals emphasised the importance of having adequate, staffing, time and monetary resources, as well as the importance of education and training on using the measure, and reminders or prompts to help them remember to use it. Parents felt a pre-requisite to the successful implementation of a measure was for all professionals to have an understanding of what palliative care is. Parents wanted a trusted professional to support completion of the measure and nurses were identified as most appropriate due to the relationship they had with families. Parents also highlighted a need to improve communication and information sharing to avoid children and families having to answer distressing questions or share their stories multiple times and professionals also felt the measure may help facilitate this.
These workshops have supported the development of a UK context-specific, evidence-based and experience-informed Theory of Change and will inform the development of an implementation plan for C-POS in the UK. Future work will involve the review of the Theory of Change as part of a pilot study to test the Implementation Plan in practice.