The Persistence of Narrative: Losing our Stories
2016 PaCER Internship Study
The start of a new series
The PaCER Innovates blog will post a series of Internship research stories with a focus on the patient voice. The first story in our series, from the 2016 Internship - Experiences of people finding their way to manage from crisis to recovery; sponsored by the Alberta Addictions and Mental Health Strategic Clinical Network, tells of the early experiences of individuals facing mental illness.
What everyone has in common is that they can produce a life story. The story of self. In order to have relationships we've all had to tell little pieces of our story. It's a story dependant on personal experiences and how your character exists within them, other characters within our story, pieces accumulated and pulled together into layers of who we are.
The importance of our stories...
As new Interns, we had a common experience of mental illness and were drawn into thinking about the beginning of our experience with mental illness because we thought at least we had that experience in common and no one had ever talked about it before.
In our Set focus group we were inundated with people wanting to take part in our study on early experiences. However people were conditioned to introduce themselves as ‘"I have schizophrenia and was diagnosed at 22 and I go to the schizophrenia society." We had to encourage participants to go chronologically back in time, step-by-step, to find their stories and re-tell their experiences. We were surprised in analyzing our SET group that, we too, had to work to go back to our first experiences.
In the Collect focus group we entered the stories in story templates but became intrigued by the themes that emerged easily and abundantly. After trying to process 24 themes we lost our way. Luckily, we then conducted narrative interviews and the process itself led us into stories where we realized the themes we had worked so hard to find were in fact only parts of full stories.
We each transcribed and analyzed our interview stories, doing our notes and open coding. We found that when we talked about stories as titles "help I’m in here" we were talking about stories as units that were easy to analyze. Through this we were able to grieve our own loss of our early stories. We could now could see ourselves in every single story. We ended up with 8 scripts that stood alone; powerful and significant but we couldn’t see the bigger picture. We drew a stick person and began to think about individual stories as connected in time. The first ‘in time’ experience was about shifting thoughts, watching everyone. ‘"I had been watching people for two years but from a different place, when questioned I would hide my thinking." We were able to pull everyone else’s first time story and we were on our way to creating a series of common experiences or story scripts related to the sequence of time.
At Reflect we presented discrete scripts and participants excitedly told their whole story guided by the scripts we had posted. After we tried to add this new data we realized that they were telling not new data but their story through our ‘theory’ of loosing our stories. We had in effect created a time line with the title, 'Losing our Stories'. After Reflect, when we were working on the working theory, one study participant declared "This is what I’ve lost and now know it, I can move on a get my life back."
After we presented our theory at a conference, we were inundated with requests to present for groups of professionals and patients. People come with an illness story, well polished and that’s important because it’s become their dominant story. Rediscovering their early experience allows people to reclaim themselves and to grieve their lost stories and move forward.
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