Making Engagement Happen: the Story of Hidden Pathways
2013 PaCER Internship
The PaCER Innovates blog will post a series of Internship research stories with a focus on the patient voice. The second story in our series, from the 2013 Internship - The Hidden Pathways of Chronic Illness - the study of a cross section of chronic patients and their journey to wellness in spite of health concerns, sponsored by a CFHI grant, tells of the experiences of patients facing chronic health issues.
Through drawing pictures of our journey, telling about it to others, using metaphors to describe what we didn’t have language for, we created a way to do research to explore hidden pathways through chronic illness.
As Interns in the second cohort, we realized that we could do research to pry open the lid on a shared but hidden journey through chronic illness. This is our story of how we were able to overcome the biggest barrier of all in patient engagement – seeing ourselves and being seen through our medical experience. The illness story is so strong it overpowers our personal journey.
As Interns we quickly discovered our differences - specialists, pain and treatments but this didn’t interest us. Luckily, Sandra had kept a journal of her personal journey to stay positive and healthy through two serious chronic illnesses. We then set out to try different ways to depict our personal journeys and discovered we had, without knowing it, been struggling to find our way back to wholeness in spite of our health problems. Through drawing pictures of our journey, telling about it to others, using metaphors to describe what we didn’t have language for, we created a way to do research to explore hidden pathways through chronic illness.
In our Set focus group we tried our creative methods where each person was invited to draw their journey through their chronic illness. They studiously used large sheets of paper and lots of coloured markers to draw their journey with music in the background to give them social space. We then used these methods in two Collect focus groups. When they were invited to share their journeys, they spontaneously stood, held their maps in front of them and described their journey while others asked questions and shared their experiences. As they saw their maps being placed on the wall, the journey became real and they were ready to explore their personal experience as separate from their time in clinical pathways. Those who wanted, explored their personal journeys through narrative interviews, looking deeply into their lives and hopes for the future.
With all this information we had to find ways to capture the newness of the knowledge because it spilled over our thematic analysis. We ended up using visual metaphors and personal stories to capture the journey. Once we had met with the Reflect group to sort out the final results, we each took a stop along the path and went through all the data and compiled detailed descriptions.
The Six Hidden Pathways
- The shock of being faced with losing the life you expected to have is like finding yourself in an alien land, overwhelmed with raw emotions, afraid, angry and in pain.
- As the shock wears off, you and your family rush into action to find a way out, following paths to change your situation: you eat well, exercise, meditate, search the internet.
- You have exhausted ideas, family, professionals and slow down, go inside and get in touch with your illness and yourself. There is no way out, or away, you are the one who must deal with this new reality.
- You begin to re-engage with life and you find ways to know your new self and what you can give to others; you become more settled.
- You find ways to modify how you present to others, you study what others need to hear and know about you; you are the perfect patient, the brave friend. It works but you carry a guilt about hiding who you are but eventually you learn to identify what is worth holding on to.
- Understanding you are more than your condition and that it will be unpredictable. You can learn and be creative, cope, and find others to help.
Yvette’s Engagement: a patient researcher engages as a patient and researcher, finding her metaphor of 'The Alien Land'
You and your family have been away on vacation and return to your farm in south eastern Alberta. The sight before you is shocking and surreal The entire landscape that was once flourishing with green grain fields around the farm is nothing but fields of brown earth and short straw stubble. As you drive up the driveway toward your home, you are more shocked. The house and outbuildings look starkly naked as there is not a shred of colour visible where the trees, shrubs and garden had been lovingly planted. All that remains is a moon scape with tree skeletons standing in the brown earth and the carcasses of grasshoppers. This scenario might be similar to those confronted with chronic illness. Life proceeded as normal and then one day a huge, foreign landscape was before them. I heard how participants found themselves after a diagnosis of chronic illness in a bleak, unknown territory that once had been home.
"Listening to patients telling about being suddenly thrown into a terrifying new place was a very different approach to research. I had not realized how much this method would challenge my prior understanding of what counts as research, having spent most of my career using quantitative methods. I can see that we can make a difference in our medical system by using this new method. Engaging with patients meant that I wasn’t in control, nor could I predict behaviour or outcomes and I became more open to the ‘messiness’ of the human experience."
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