“Nobody took time to tell me to watch out for this”

1. “Nobody took time to tell me to watch out for this” Understanding risk and social support among people living with type 2 diabetes Julie Armin, MA (University of Arizona), Susan Shaw, PhD (U. of Arizona), Annamarie Schaecher, MA (U. of Arizona), Sandra Leal, PharmD, CDE (El Rio Health Center), Jeffrey Petruski (U. of Arizona) Presentation for: Society for Applied Anthropology/Society for Medical Anthropology Meeting March 28, 2008

2. Anthropological Investigations into Risk and Chronic Disease • Individuals construct personalized perceptions of risk (Armstrong 2005) • Many factors affect perceptions of risk (Paisley et al 2002) • Education that ignores these factors individualizes self-management “failures” (Peterson 1996)

3. Anthropological Approaches to Diabetes and Social Support • Complicate biomedical notions of disease etiology (Scheder 1988, Schoenberg et al 2005,Rock 2003) • Recognize cultural and structural effects upon self-management (Becker et al 1998, Becker 2001) • Examine social support from a “cultural” rather than cognitive perspective (Dressler et al 1997, Dressler and Bindon 2000)

4. Methods • Pilot study in Tucson, AZ • Qualitative research/participant observation • 13 participants (interviews and focus groups) • Four-year NIH study in Springfield, MA • Quantitative and qualitative study • N=400

5. Clinic Population • 27% patients uninsured • 47% patients on Medicaid • 54% patients at or below Federal poverty level • 38% patients under 15 years old • Approximately 72% Hispanic, 10% Native American

6. Findings

7. Safety net providers must acknowledge the long-term needs of diabetes patients “When I left the hospital, they told me nothing. …they didn’t give me a prescription for a meter or anything. They gave me pills and said take these at this time and don’t eat sugar and go see a doctor. And I told them, well, I don’t have a doctor. And they said, well, you need to get one. And that was it. That was all I got from the hospital…. So I had no idea. And it took me, you know, about a week and a half to get in and see a doctor. I had to go through all kinds of stuff, get all my paperwork together to go down to [the clinic] and get signed up.” --Jessica

8. “I knew nothing, and so he spent a lot of time with me that first day, explaining this is how foods work and this is what you need to do and he gave me the whole little meal plan and calorie-counting guide thing and all kinds of stuff.” --Jessica

9. Food is part of numerous social interactions • “I’m just gonna have to quit eating! That’s just what I thought! I’ll quit eating!” --Betty • “You know, they like that lard and they like this…so I’ve been a diabetic around fifteen years and it’s taken me a long time to change the style of cooking because of the family…” --Ana

11. Friends and family members take on additional roles as caregivers “He comes in because, well, my children look after me. Sometimes he asks the doctor questions in English. He explains.” --Imelda

13. Friends, family, and patients themselves are fearful of diabetes complications “I say, no, just one. [in husband’s voice:] No, I have to eat. You don’t have diabetes, I’m the one that has diabetes. [her voice]: So that’s the problem I’m having now. The other problem is that his sugar isn’t controlled. I don’t know. Even though he does his exercises, his sugar is high. … sometimes it’s too low. That’s the problem. He’s given me two scares.” --Lola

15. “…I saw him in a wheelchair with no legs. Both legs were amputated. I thought it was him and at the same time it was a different person from the one I used to see.” He said, well, I’ll give you what I can. I’ll help you whatever I can. He told me it was three first things I was going to lose: my vision, my kidneys or my legs. He said, look at me: I don’t feel no pain, no nothing. But I had to lose my legs...” “…. where should I go? How do I buy [the glucometer]? So finally in January, my new year’s resolution, I got my family, my daughters and my wife. I told them, that I wasn’t getting no help. That instead of getting better, it was getting worse and worse. It’s getting to the point that I have to leave my work. I have to leave my work.” --Antonio

16. Final Thoughts • Post-diagnosis bodily disciplining process is shaped by risk discourses and other factors, including access to health care. • Support from family and friends is supplemented by the clinic’s education and case management • Perceived risk for complications affects expressions of support and self-management approaches

17. Acknowledgements • National Cancer Institute, grant 1R01 CA128455-01: The Impact of Cultural Differences on Health Literacy and Chronic Disease Outcomes • Social and Behavioral Sciences Research Institute, University of Arizona