Back in the summer of 2014 I devised a simple paper-based tool to help brain injury survivors map their rehabilitation journeys through a gentle creative process. It was part of the work I did for the Movement Science Research group at Oxford Brooke’s University – helping them to understand how to create a patient-centric digital rehabilitation monitoring tool. Having tested it successfully with a group of brain injury survivors in a workshop at Headway Oxford, it was frustrating not to be able to find a way to develop my ideas into a simple, low cost and flexible tool that could be used by brain injury survivors to periodically record their experiences of rehabilitation.
Since then I have been mostly engaged on a project co-designing a simple method and tools (based around bookleteer.com) for documenting Traditional Knowledge with villagers living in the jungle in Papua New Guinea, as well as with my work on data manifestation. As the notebooks for documenting knowledge have evolved, I have seen how they enable people to capture things that they value in ways that help them communicate and share that value further. Reflecting on this over the past few months, it made sense to think about adapting the ideas for the rehab journey tool into a booklet – utilising the simplicity, low cost and ease of use of the bookleteer format, something requiring no immediate investment beyond my time.
I was also inspired to do this having seen the excellent Patient booklet co-created by Grace Tillyard as part of her Breast Cancer Awareness project in Haiti. I have been providing a small bit of advice to Grace over the past year and half as she developed her programme, and we had talked about using the bookleteer booklet format as a simple way for people to record their experience of cancer treatment and recovery, as well as providing them with information about the process and possible outcomes. Her use of bookleteer to create a powerful tool that can be used effectively in the complex socio-economic environment of a developing country is truly inspiring.
Having discussed my idea with my friend and colleague David Sinden, who co-facilitated one of the workshops in Oxford with me for the TBI project (and who has himself survived a brain injury), I have now created a draft notebook format to help people record their experiences of the rehabilitation journey. It develops on from the original worksheets, encouraging survivors to use both words and drawing to document how they feel about their journey of rehabilitation in the present moment. The prompts ask for feelings related to time, progress, fluctuation and speed of rehab, as well as an overall mapping of the journey itself.
As with the notebooks for documenting Traditional Knowledge, I felt that it was important for people to be able to personalise their notebooks by putting a photo on the front cover. This might also serve as a visual reminder of how someone was feeling at the time, as well as how they look (or, for instance, include the face of someone who might be helping them fill out the book, such as a carer or friend). This can be easily done using the same sort of low cost kit we use when in the jungle of PNG – a basic cameraphone and Zink photo printer (e.g. the Polaroid Zip printer or Snap camera/printer).
What might the benefit be?
When I ran the rehab journey mapping workshop with five brain injury survivors at Oxford Headway in August 2014, they all became very invested in the process and were vocal in expressing their enjoyment of the task. It was highly social, with a lot of mutual support (especially in remembering things for each other) and free-flowing conversation which in turn provoked considerable self-reflection. I acted as the scribe for one of the survivors, assisting with writing and drawing for her. At the end of the workshop she thanked me and said that this exercise had been the first time anyone had sat down with her and listened to her describe her experiences since she had suffered a stroke about 12 years before. I asked the group if they thought it would be worth doing the exercise again, perhaps on a fairly regular basis (such as two or three time a year). They all agreed that it would be worthwhile, not least because it would give them a sense of how their feelings about their rehab journey change over time and this would give them a way to recall how they have felt at different times.
It is this aspect of self-observation that seems to hold a great deal of value in the process – not just for personal reflection, but also when discussing an ongoing rehab journey with the clinicians, physicians and other professionals and carers who are supporting survivors. Building up a collection of these observations over time could help reveal patterns that often evade us as we live in the moment. They are a form of data that could be useful for longitudinal analyses of the changes and adaptations experienced by people over prolonged periods of rehabilitation. They offer the potential to collect and collate rich, qualitative information about how rehab is experienced by the survivor themself which could enhance other quantitative data already being collected as part of ongoing care and health management.
The draft notebook is available for anyone to try out in two sizes: Small (A6) and Large (A5). This is just a first step and is in need of feedback to both be improved, and built upon – as there are undoubtedly other ways and tools which could add to this. David and I will be collaborating on testing and extending the format as well as devising a practical process or methodology for both health professionals and peer groups of people experiencing rehabilitation to use it. We hope to have more news about this in the Autumn.