Table 2.
Functions of Stories in Community Engagement Studios.a
| Function | Description | Examples from Studio discussions (stories in italics and boldfaced for emphasis) |
|---|---|---|
| Establishing mutual understanding | Establishing mutual understanding, providing reasons and priorities, responses to specific questions | Prompt: What are some of the factors that pushed you to get a mammogram? I think mine was because my first cousin had breast cancer and she got it at like 29, and she didn’t know that she needed to get a mammogram. She found a mass and when she went and got a mammogram, she had breast cancer. [Answering the specific question with a story] Prompt: Why did you or the person you love not do what they were supposed to do even though the doctor said, “This will make you healthier,” or “This will keep you healthy?” How do we address that? Participant: Sometimes it is painful to do what the doctor says to do, physical pain. A lot of people resist physical therapy even though they know it’s going to be good for them because it hurts. Participant: I think it depends on, too, how sick they are. My nephew died last year from scleroderma. When he got that diagnosis, and the doctor said his life was going to be like three years, and he keyed in on the three years. So, he didn’t do a lot of taking his meds and going to the doctor and everything. I think it depends on what their diagnosis is and what they are going through. [Using a story to explain one reason why a person might not be adherent to treatment] |
| Expansion and Depth | Moving the discussion by expanding on a point, adding detail, or adding a new dimension | Prompt: How can we take the stress of the financial part of it off the caregiver? That’s a big question. I don’t think it will, because I care for my sister. Fortunately for her, she has [insurance], and so far they have paid for everything because she just got out of [hospital]. She had been there for like nine days. The financial burden, as far as the medical side of it, is okay, but as far as the things we have to do for her, because now she is at home on oxygen and we are doing all these things to try to keep her from smoking. But I think the emotional burden on caregivers, knowing what she is going through, and bringing her in and out of the hospital…we bring her to the E.R. and they send her straight to the ICU and they might keep her for a day or two. This is just a constant in and out. [Using a story to expand the question of the financial burden to include the associated emotional burden] |
| Characterization | Providing examples of abstract ideas |
At the new place, we got our floor, so it is more discreet than it was, but if it was not for the discreetness, I don’t think a lot of people would come to doctors’ appointments. It is a big social stigma.
[Giving a specific example of what “discreet” means in the context of a specific stigmatized illness] |
| Providing context for experience | Helping others understand how a phenomenon is experienced with respect to a specific contextual domain | See the specific contextual domains below. |
|
Bodily experiences and interpretations of them |
People keep telling me it’s not as bad anymore, but I felt that when I had an abnormal reading it was because of something they did because of the way that they handled my breasts. I just didn’t like that. I’ve just not gone back.
[The body is a central element of the person’s experience of mammography and why she has not returned] |
|
Experiences of fear, frustration, and other emotions |
I took mine and I went home, and when I went back for my doctor’s visit, they said it was fine, but the time between then, I didn’t know…and I didn’t know it was normal to wait. I had a screening, and I was in this screening population, but I didn’t know any of that information. It is nerve-wracking, and you’re thinking, “You sent me [for this screening] because of this, this, and this, and now I have nothing until I get to the doctor’s office.” We live in the Information Age when everything is so quick, so why is it taking so long?
[Emotional experience is labeled “nerve-wracking” along with details about the wait for results] |
|
Embedding illness experiences in processes or daily activities, eg, work or school |
I work in an industry where I have a very flexible schedule if you are only asking off for four hours once every so many months versus two hours this week and then two weeks later because then they start to question, “What’s wrong with you?”
[Managing illness in the context of a job] Another participant: When I was at my job, I was buying a house, and for two months, I didn’t have a home. I literally was homeless and my adherence went down 50%… [Daily context of homelessness influenced illness-related activities] |
|
The context of the self |
I have had a couple of start-stops going on for various reasons. Some of those are my fault, my choice. I just wasn’t ready to get into the fact that this is part of my life now.
[Description of how one’s identity must shift to include the illness as an aspect of one’s life] |
|
Experiences of biomedical or other institutional context |
My gynecologist really didn’t leave it open for debate. She just said, “Here is your appointment. You need to make your appointment to come back and see me one year and one day after today, and then you can’t go back and see them until one year later.”
[Detailed interaction with a health care provider and implications of an insurance policy] |
|
First experience of illness, eg, diagnosis |
I just had some tests done, just routine labs, and she got an A1c. She called me back and my doctor always mails me my lab results. But she called me and said, “Your A1c is [high],” and I said, “No it’s not.”
[Initial reaction of denial at discovering an illness is present] |
|
Relationships and their impacts on the topic being discussed | Participant: This is a hard one on me because I am the only boy in my family. I see that most women keep up with it more than men. I don’t know why. Now, my sisters, they are like, “I ain’t going to the doctor!” Ever since I was 10 or 11 years old, if I have a toenail hurt, I am going to go to the doctor and see about it. I don’t want anything to slip up on me. Some women…I ain’t sayin’ like y’all, but my family - they won’t go to the doctor. I got two sisters right now. They’ve both got cancer, and they just found it, and one of them is 41 and the other one is 32. When momma passed away, they feel like I should be the one to tell them. I can’t tell y’all. Y’all need to take care of yourself! [Participant reveals his careful approach to health and the burden he feels in the unwelcome responsibility for his sisters’ health] |
|
Experience in physical spaces |
This last time I went…I wasn’t brought into the room with the robes. I was just ushered straight into a mammography room…That felt oddly isolating; in some ways being in the room with the other women was oddly comforting to know that I wasn’t the only one stressed out over this or having to do this every year or every six months.
[The group waiting room was a source of comfort and social support] |
Abbreviation: ICU, intensive care unit.
a Example stories from each category are in bold text. Additional text from other Studio participants is included to demonstrate the role of the story.