Barriers to Glycemic Control among Latina Diabetics: A Multi-Method Study

1. Barriers to Glycemic Control among Latina Diabetics: A Multi-Method Study M. Diane McKee Jeff Levine Eliana Korin Charles Schwartz Alison Karasz Arthur Blank

2. Background Latinas with Diabetes Mellitus: • Disproportionately affected by the illness • Control less successful, even for patients receiving primary care Efforts to improve care via Chronic Care Model: • Focus on systems to increase patient information for providers and self-management for patients • Attention to mental health largely focused on depression Improving diabetic care may require a broader, integrated approach targeting: • Socio-cultural and family barriers • Mental health barriers go beyond depression

3. Specific Aims For Latinas with well-controlled versus poorly-controlled diabetes: • Obtain preliminary data about mental health variables, including mood disorders and abuse, • Investigate the socio-cultural context of diabetes care with emphasis on barriers to successful management, • Use quantitative and qualitative methods to explore family relationships and family stresses.

4. Setting and Participants Setting: 6 Bronx hospital-affiliated family medicine practices Participants: Latina women with diabetes receiving primary care Inclusion Criteria: • at least 2 visits to site in the past year, and • highest HgbA1C<7.5 (“well-controlled”) or > 9.5 (“poorly controlled”) • self-identified Latina

5. Recruitment • Potential participants identified by CIS (problematic) and diabetes collaborative database (much more useful) • Letter mailed signed by PCP • Phone outreach to patient by research team (!) • First 20? participants invited to take part in both qual and quant on separate days

6. Qualitative-Objectives To assist in designing effective interventions for Latina women with out-of-control diabetes, we explored: • Socio-cultural and family factors affecting diabetes care • Health beliefs about diabetes: illness, prognosis, treatment • Diabetes in current life context: where diabetes “fits” among competing priorities • Mental health issues impeding care

7. Qualitative Methods Data Collection: • In-depth qualitative interview (English or Spanish) lasting 30-70 minutes (phone or in-person) • Audio taped, transcribed verbatim, then translated by professional translator The Interview: • Perceived overall health status and main health concerns; • Participant’s stories of how diabetes affects their families; • Descriptions of self-care activities and barriers; • Prompts explored interaction with the health care system, and family dynamics related to diabetes.

8. Qualitative Analysis • Team reflexivity exercise completed before analysis • Coding scheme developed and applied • A set of psychological and contextual factors were identified that were hypothesized to be associated with decreased ability to engage in diabetes self-care • Each narrative systematically re-examined to identify these these factors in relation to glycemic status • Variables hypothesized to be related to decreased ability to engage in self-care were found in individuals with good glycemic control • Narratives re-examined to identify strengths that might contribute to good glycemic control

9. Themes Latina Context • Family legacy of diabetes • Diabetic diet as culturally alien • Tension between care for self versus others • Socioeconomic limitations Maladaptive Psychological Styles • Fatalism • Blurring of symptoms • Treatment worse than the disease • “Talking the talk” without “walking the walk” • Psychiatric symptoms and disorders Sources of Resilience • Self-efficacy • Family support and adaptation to diabetes

10. Family Legacy of Diabetes “….I’ve seen what it did to my parents…you know, my parents lost the eyesight, their kidneys failed, (they) were on dialysis…so…I had it in the back of my mind….” “…we expected it (diabetes)…we knew our parents had it and died of it…we prepared ourselves that sooner or later we would get it…”

11. Care for Others versus Self-Care direct conflict between diabetes self-care, and the revered role as matriarch and caregiver “….that’s the problem in my home…I’ve always been the tree trunk…the one helping (to keep) things together…”

12. Diabetic Diet as Alien diet at odds with culturally meaningful foods; in direct conflict with preparing and serving meals appealing and nurturing to families “….I’m used to eating a certain way. When you have diabetes you have to change your whole life around. You have to eat a certain way and it’s kind of hard. I mean being Hispanic I love rice and beans (laughs)…you know?….”

13. Socio-Economic Limitations “…Because you go to the supermarket, you buy things for the family, and…your diabetes is not on the dot in the budget” “…Sometimes I don’t have (money). So how am I going to keep on a diet?” “…if I don’t have any control of what I have…I eat whatever is there”

14. Blurring of Symptoms Mixed physical and mental symptoms, often seen as all due to diabetes; leading to adoption of maladaptive self-care strategies “ …I have a sickness in my body that is called [fibromyalgia]..the thing is that when my body hurts me, I don’t know if (it) is the arthritis, depression, fibromyalgia… or diabetes, or my nerves. The thing is that I cannot say if it’s one more than the other, but the diabetes makes me feel bad and I get a lot of dizziness..”

15. Treatment Worse than the Disease “….Actually, when [my blood sugar] is high I’m OK. According to the doctors….my body is used to it. When they try to control it…it starts coming down…I have a problem. That’s when I start getting sick…they call it withdrawal…of the sugar….”

16. Fatalism “If I have AIDS, if I have cancer or diabetes…I already have it…If I like it I eat it. I tell [my family] give it (the candy) to me…if I am going to die, I’m going to die anyway…”

17. “Talking the talk” without “walking the walk” “(My health) has been fine in the past year, no problems. I watch what I eat and take my medication…I have to take care of myself …because...I’m completely in charge of my kids’ well-being…you gotta take care of yourself…because you have people to take care of…a very close friend…I nudge…we get on each others’ case…” [HgbA1C 12.7]

18. Beyond Depression Participants with a very wide range of psychiatric problems: • Depression • Thought Disorder • Panic Disorder • Generalized anxiety • Fibromyalgia and other somatization • Psychiatric and substance disorders in children, partners, siblings, parents • Bereavement: multiple, prolonged, complicated • Chronic psychosis

19. Sources of Resilience Individual Resilience: Self-Efficacy “I tend to be a type of person that I nip things in the bud. I don’t like to let it go…” “Exercise. I do walk for an hour-that’s what helps contain it, because I can’t say I follow a great diet. cause I was working out I didn’t need the medication. You know people say oh I’m tired, I can’t go to the gym. When you go to the gym and all of that goes away. And it’s so good for you”

20. Family Resilience Family Resilience: Role Adaptation to Diabetes “My family worries about me. They just want me to take care of myself…Oh (my partner) loves (to cook healthy foods)…I tell him what to do …now it’s different cooking and ingredients…”

21. Qualitative Insights • Narratives with inner city Latinas illustrate major barriers that go far beyond knowledge and motivation and limit participation in self care activities • Barriers to glycemic control include • Contextual factors (limited resources, family stressors) • High burden of co-morbid mental illness • Maladaptive individual styles • Blurring of mental and physical symptoms, attributed to DM • Lack of insight into actual self care • Fatalistic thinking • Belief that treatments is worse than the disease

22. Qualitative Insights • Resilience of individuals with diabetes, and/or their families may mitigate success or failure of efforts to control diabetes • Interventions with Latina women should be sensitive to the unique Latina experience of diabetes • Fear and potential fatalism resulting from the family legacy of diabetes • Conflict between the Latina role as matriarch and caregiver, and the need for diabetic self-care • Include culturally sensitive implementation of the diabetic diet

23. Survey-Objectives • Measurable psycho-social predictors of glycemic control • Explore hypotheses related to socio-cultural context, family environment, and mental health • Post-hoc analyses to explore hypotheses generated by qualitative data

24. Domains and Measures • Depression- PHQ • Bipolar- MDQ • Alcohol- CAGE, AUDIT • Abuse- Abuse Assessment Screen • Regimen Specific Social Support • Diabetes QOL- PAID • Family Cohesion and Conflict- FES Familism • Physician Trust- Stanford • Health Literacy (STOFHLA)

25. Recruitment and Participation Final quantitative sample n=102 • 320 invited by mail • 197 unable to reach (62%) • 21 refused (17%)

28. + t-test is used to obtain the parametric p-value • ++ Wilcoxon rank-sum test (equivalent to Mann- Whitney U-test) is used to obtain the non-parametric p-value • #Effect Size (d) is computed based on out of control group SD • Standards for mean difference ES's according to Cohen (1988) are: • Small = .2SD; Medium = .5SD; Large .8SD Table 5. Group differences of scales

29. PAID • Higher score reflects greater distress related to diabetes • Only scale with significant difference between groups (p=.046) • In-control 24.7 (18.3-31.2) • Out-of-control 38.0 (27.9-48.1)

31. Mental Health • Depression (PHQ-9) • Mean All: 7.4 (7.1) • Mean IN: 7.2 (7.0) • Mean OUT:7.6 (7.4) • Depression (PHQ>10) • P=0.56 (Chi-Square)

32. Mental Health • Bipolar (MDQ) • Mean 3.6 (3.6) • In 3.2 (3.2) • Out 4.2 (4.1) • Bipolar (MDQ>7) • Chi-square=.01, p=.02

33. Family conflict and cohesion • Overall, measures performed well in population (alphas .88 to .97) • Exception: FES • Cohesion (.43) • Conflict (.73) • Cohesion mean 8.1 (norm 6.9) • Conflict mean 1.5 (norm 3.26) • Not a predictor of glycemic control

34. Additional Findings • Health Literacy • Mean 26.8 (10.1) • Lower than general population • But adequate and no difference between groups • Abuse and substance use • Much less common than anticipated • Responses probably not valid • But this problem is unusual and may be particular to the population • Familism • Highly endorsed but not discriminating

35. Post-hoc Analyses • Role of blurring? • Is there quantitative evidence of the resilience factors we identified? • Why such high correlation between PHQ and PAID, yet only PAID discriminates glycemic control?

36. Blurring PAID: “Which of the following diabetes issues are currently a problem for you?” … #7. Not knowing if your mood or feelings are related to your diabetes?

37. Resilience: Can we detect within scales? Self-efficacy and optimism

38. PAID vs PHQ • Created subscale with 7 PAID items most reflecting depression • Hypothesized these items would correlate even more strongly with the PHQ • “Depression items” of PAID no more closely correlated to PHQ than instrument as a whole

39. Limitations • Preliminary study intended to generate hypotheses for more formal testing • Study did not control for intrinsic diabetic disease severity, i.e., subjects with mild disease may have done well and subjects with severe disease done badly, irrespective of other barriers • Findings only relevant to patients receiving regular primary medical care

40. Limitations Interviewing process used in study was less effective than intended in the following areas: • where diabetes fits in to the hierarchy of multiple life priorities • impact of diabetes on and adaptations in the family • individual patient suggestions for potent and practical interventions to improve self-efficacy, family adaptability, other barriers specific to the patient/patient’s life circumstances

41. The Chronic Care ModelWagner EH et al., Improvingchroniccare.org

42. “Self-Management” in the Inner City Latina Context • Will need to reflect cultural meaning of diabetes, particularly the family heritage, and the personal meaning of a legacy of tragedy • Will need to consider specific dietary modifications • Will need to respect the woman’s aspirations to care for others rather than herself • Might not expect agreement on the importance of “control” of diabetes at the outset – or even for some time

43. Acknowledgements • Nancy Bassett • Eduardo LaCalle • Nellie Fernando • Jason Fletcher • MMG and Bronx Lebanon • DRTC!