Developing a support book for people after major trauma and their families
St. George’s Hospital Major Trauma Centre, Giving to St. George’s (St. George’s Hospital charity), Juliet Blackledge (book design).
Whilst major trauma centres are delivering high quality acute care, there is a high level of long-term unmet needs in people after major trauma and geographical disparity in their post-discharge care and rehabilitation. Self-management support started early can help these people and their families better prepare for discharge from hospital and life beyond.
- To co-design a book with people after trauma and their families that, when integrated into the working practices of an acute multidisciplinary trauma team, can better prepare them for discharge from hospital and life beyond
- To evaluate the impact of the book on staff, patients and their families at St. George’s Hospital major Trauma Centre.
What We Did
We co-designed and evaluated the book over two years (2016-2018).
Discovery: we learned about the experiences of people after major trauma and their families through focus groups, and what self-management support would be meaningful to them. They liked the idea of creating a book for people after major trauma and their families and many of them volunteered to share their stories, top tips and ideas for the book.
Co-design of a prototype: we interviewed eleven former patients from St. George’s Hospital MTC, and five of their family members (the authors) to create content for the book. We enjoyed going to the authors’ homes and places of work to hear their stories. We extracted themes from their interviews to create the book content, always checking with the authors that the content accurately reflected their experiences and what was meaningful to them. Our designer Juliet designed a prototype that we shared with the authors during an evening get-together where they provided feedback on the overall look, feel and content of the book. We also shared with prototype with members of the project team from St. George’s Major Trauma Centre.
Final version: The final version of the book was printed in April 2018 and shared with the authors and staff at St. George's Major Trauma Centre.
Evaluation: We launched the book on the Major Trauma wards through two-hour launch events hosted by Evi, one of the books' authors and Lucinda from the Bridges team. The aim of the book launch was to engage the multidisciplinary team in working out how the books can be usefully integrated into their daily work and better provide the support that is most meaningful for patients and families; hope, confidence and not feeling so alone.
- We co-designed with people after major trauma and families, a self-management book that can support them and be integrated into the working practices of a multidisciplinary major trauma team
- We trained 48 multidisciplinary staff through brief two-hour training
- We created a new training package for multidisciplinary trauma teams.
What We Learned
- Patients and families are highly satisfied with care and support but can feel ill-prepared for discharge and life in the real-world (there are quick, simple ways to address this)
- Recovery is not linear, it’s up and down and the downs can be very down. The book authors wanted other patients and families to know about and expect the ‘downs’ as well as the ‘ups’
- Recovery is about creating a ‘new normal’ rather than returning to ‘how things were’
- To create meaningful programmes and resources you really need to work with both patients and practitioners, and this took longer than we anticipated.
- Co-delivering training with people who have experienced a major trauma is more powerful and effective than we imagined.
Book authors: Ricky, George and Dana, Simon, Evi, Millie and Nick, David and Barbara, Vivian, Trevor, Chris, Frankie and Carol, Minal, Grace and Gloria, Mark, Dan Henry and Bonny-Lea.
Paul Marshall-Taylor, Principal Occupational Therapist, Trauma and Orthopaedics, St George's University Hospitals NHS Foundation Trust
Leila Razavi, Assistant General Manager, Major Trauma and SWL&S Trauma Network, St George's University Hospitals NHS Foundation Trust
Chrissy, Fiona, Lucinda and Heide from Bridges Self-Management
We are indebted to the book authors who generously shared their stories of managing life with multiple injuries – we see their stories as a gift.
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