The ETHoS project set out to create a care environment that would minimise the stress suffered following the sudden onset of stroke and improve the whole rehabilitation experience.
Narratives played an important role in helping staff to gain a better understanding of the experience of stroke from the patient's perspective.
Stroke liaison nurses identified three young women post-stroke as the potential storytellers. They used their knowledge of each woman to assess their readiness to take part in such an exercise and obtained informed consent.
Following stroke, many people experience a deep sense of loss. Often they feel a need to deal with the emotional turmoil and can find it helpful to share their experience with others. However, to be truly helpful, each person must share more than just the painful memories. In fact, repeating just the painful aspects of stroke can have a negative effect on recovery, resulting in patients ‘getting stuck’.
When inviting people to tell their stories, it was important to try to establish the right conditions for remembering.To help with this, the interviews took place in the patients’ own homes with the stroke liaison nurses also present. The nurses played a key role in the process, building on their established relationships with the patients.
The women were asked to talk about their lives before the stroke and then their experiences of having the stroke and the rehabilitation process. During the discussion, time was taken to recall happy memories as well as the more painful experiences. Aspects of life that had found new meaning following stroke were also considered in detail.
Remembering was just the first step. Efforts were made not only to draw out the personal experiences and memories, but also to help each woman to form these memories into her own story. This was done by subtly reflecting back what was said. Shaping the story in this way seemed to help the storyteller to take ownership of the experience and accept it. This acceptance and detachment in turn was found to encourage 'moving on'.
All 3 women reported that telling their stories had been very therapeutic. They particularly appreciated being invited back to the acute setting. This presented an opportunity to say thank you to the staff and also to discuss their experiences of the care that they’d received ‘as people not patients’. This was hugely beneficial to patients and staff alike.
Linda and Mo’s stories are available for download in the Story Library: ETHoS Narratives
The nurse just took time to talk to me. She spoke to me, not to the people with me, and told me what was happening, what was wrong. She told me what was to happen to me, every step. I felt safe, I went home knowing that I was going to get better.
NHS Service User