“I know there is strength in the differences between us. I know there is comfort, where we overlap.” Ani DiFranco
Self-management is becoming more established as a way to improve clinical outcomes, feelings of loneliness, quality of life, and reducing the burden of care on health care systems1–3. For stroke this is particularly important, as it is the main cause of complex disability in the UK 4. Many stroke survivors feel abandoned after rehabilitation ends 5 and 59% are left with long-term unmet needs6. There is now emerging interest in the potential benefits of stoke self-management programs (SMP) delivered in a group setting. My research is an NIHR funded GUSTO study looking at just this.
GUSTO is based on Bridges, and is a 4-week intervention run for two hours each week. Each session started with a discussion about living with stroke or what challenges people had been facing. The sessions would end with individuals setting a small target that would like to try and complete by the following week, for example, going to bed earlier or only drinking one glass of wine with dinner. The group would then reflect on their progress the week after and problem solve any challenges. It was important was that the group was not led by the researchers but facilitated, and that each group member still felt the intervention was individualised.
The group was formed of a random sample so there was no reason anyone in the group should have anything in common other than stroke. Despite this, the group seemed to gel really well, illustrated by the empathy and collaboration that occurred. For example, one group member had bought in a list of local services for someone else who had said they had no local support, and another had made a stencil for a peer who said she wanted to improve her writing. The intervention began taking a form of its own during the fourth session when one person bought in a homemade lunch, and the group were planning to meet up again, highlighting the group bond.
We discussed what was the active ingredient of the intervention on multiple occasions. Was it the Bridges components such as problem solving, taking action, collaboration, decision making, self-discovery and reflection, or was it the presence of peers in similar situations? One thing that became increasingly clear throughout the sessions as having an impact was what we coined, ‘The Billy effect.’ Billy was one of the facilitators and had a stroke himself about three years ago. During the third session we heard billy talk about the 300 rule, which is that you have to do something 300 to make it a habit. One individual was so inspired by this she asked for me to accompany her down the hall to start working towards 300 steps, a literal small step to her bigger goal.
When thinking about what was ‘Bridges’ in the group the techniques we were using in order to encourage SM as mentioned above immediately came to mind. But by session four, Billy mentioned in an email that. ‘for some reason I am stuck with images of bridges in my head, and their 'meaning'. This in turn got me thinking and I realised we had seen ‘Bridges’ in so many ways: From small to big goals, from one person to another, from story sharing to shared problem solving, and from biscuits to a homemade lunch!
Billy’s blog can be found here: www.neurobilly247.blogspot.co.uk