Social and Familial Influences on Chronic Disease Management among African Americans

1. Social and Familial Influences on Chronic Disease Management among African Americans Carmen D. Samuel-Hodge, PhD, MS, RD April 2, 2007

2. Today’s Presentation • Context – Focus on type 2 diabetes • Social and Familial Factors • Social Relationships • Family Interactions • Social Stressors • Implications for Self-Management Interventions

3. Wicked Problems Problems that are illusive or difficult to pin down and influenced by a constellation of complex social and political factors Source: Rittel HJ, Webber MM: dilemmas in a general theory of planning. Policy Sci 4:155-169, 1973 Cited in: Kreuter MW et al., Health Educ Behav 2004;31(4):441-454

4. Who’s Living with Diabetes? • 20.8 million people – 7.0% of the US population (all ages) • Age > 20 years: 9.6% • Age 60 and older: 20.9% • Diagnosed – 14.6 million • Undiagnosed 6.2 million • Incidence (new cases/year): 1.5 million people > 20 years Source: American Diabetes Association, 2005 estimates

5. Who’s Living with Diabetes? Source: American Diabetes Association, 2005 estimates (> 20 y)

6. African Americans • 1.8 times more likely to have diabetes than non-Hispanic whites • African American and other minority women have 2-4 times higher prevalence • Compared to non-Hispanic whites, African Americans suffer disproportionately: • Diabetes-related blindness (2 times more likely) • Lower limb amputations (1.5-2.5 times) • Kidney failure (2.6-5.6 times)

7. Metabolic Control – The Big Picture Saydah SH et al., JAMA 291:335-342, 2004 (NHANES 1999-2000)

8. Physical Activity Recommended – > 5 episodes/week About 70% do not meet recommended level  levels of activity associated with  income and education Dietary Behavior Almost 2/3 consumed>30% daily calories from fat; > 10% saturated fat 62% ate < 5 servings of fruits/ vegetables per day Lifestyle Behaviors Nelson KM, et al., Diabetes Care 25:1722-1728, 2002

9. Wickedness of the Problem • Factors associated with disease management • Access to care • Quality of care • Knowledge/skill deficits • Beliefs about diabetes(Psychological factors) • Socio-cultural factors • Self-management behaviors – diet, physical activity, blood glucose monitoring, foot care, etc.

10. Socio-Demographic Factors • Income • Education • Age • Employment status • Social/Environmental Factors • Barriers to self-care • Social support • Economic factors • Community resources • Biological Factors • Diabetes type/duration • Medical history/ status • Psychological Factors • Self-efficacy • Regimen/Coping skills • Attitudes and Beliefs Factors in Diabetes Self-Management • Diabetes Self-Management –Diet, physical activity, blood glucose testing, foot care, taking medication

11. Community & Policy Culture, System, Group Family, Friends, Small Group Individual Biological Psychological Ecological Model of Health Behavior Fisher EB et al., Diabetes Care 25:599-600, 2002

12. Social and Familial Influences

13. Living with Diabetes…(What People Say)

14. Qualitative Research Influences on day-to-day self-management of type 2 diabetes among African American women* *Samuel-Hodge et al., Diabetes Care 23:928-933, 2000

15. Qualitative Findings Dominant Theme 1 • Spirituality as an important factor in general health, disease adjustment, and coping “I’ve had 3 heart attacks. I just ask God to give me the strength to do the things that I have to do. Sometimes I think if I would stop and sit down long enough, I would die. But I’m thankful for having God on my side.” *Samuel-Hodge et al., Diabetes Care 23:928-933, 2000

16. Qualitative Findings Dominant Theme 2 • General life stress and multi-caregiving responsibilities interfering with disease management “What causes me a lot of problem, gets my nerves out of shape and cause my diabetes to flare up [is that] I live around family. And they come to my house, you know …when they get off the school bus, here they come. When they get out from work, here they come.” *Samuel-Hodge et al., Diabetes Care 23:928-933, 2000

17. Qualitative Findings Dominant Theme 3 • Impact of diabetes manifested in feelings of dietary deprivation, physical and emotional “tiredness”, “worry”, and fear of complications” “When I think about the people that … already have diabetes and they lose their limbs, you know. Sometimes I get kind of numb – my legs. And I’m worried am I next. It bears on your mind a lot.” *Samuel-Hodge et al., Diabetes Care 23:928-933, 2000

18. Similar Views From Other Populations of Color • Native Americans “I just want to say that diabetes is a real emotional issue. My dad was diabetic, his brother was, his sister was and she had an amputation. As a result, we carry a lot of pain.” Struthers R et al., Qualitative Health Res 13:1094-1115, 2003

19. Similar Views From Other Populations of Color • Native Americans (on ‘diabetes prevention’) “Some workers from IHS tell us all you have to do is exercise and eat right. Eat fresh fruits and vegetables … Where do they think they are? You know it is totally unrealistic because our reservation living conditions are sad, our families are pitiful … It makes me angry to know they can say that to us in English, and you try to tell that to the person that has 12 kids to take care of, probably no vehicle, limited income … we have all these challenges that we face every day. So I’m thinking, ‘Get real here’.” Struthers R et al., Qualitative Health Res 13:1094-1115, 2003

20. How Do We Quantify These Views?

21. Measurement Instruments • Strong Ties/Close Contacts • Social Barriers • Perceived Diabetes & Dietary Competence (PDDC) • Multi-Caregiver Role (Family)

22. Social Contact / Strong Ties 4 items; 4-point frequency responses • How often are you bothered by not having a close companion? • How often are you bothered by not seeing enough of people you feel close to? • How often are you bothered by not having enough close friends? • How often are you bothered by not having someone who shows you love and affection? • How many relatives do you have that you feel close to? Dean AE and Lin N, J Nervous Mental Dis 165:403-417, 1977

23. Social Support for Diabetes • Diabetes Family Behavior Checklist II – adapted • Frequency of 12 behaviors (praise, nag, help, etc.) • Helpfulness of behaviors • Score = Cross product (frequency X helpfulness) McCaul et al., Med Care 25:868-881, 1987

24. Social Barriers • 5 items ; 4-point Likert scale responses • Measure problems related to • Money (finances) • Street crime • Housing • Family • Family care-giving responsibilities * Hill-Briggs F. et al., J Gen Intern Med 2002;17:412-19

25. Household Characteristics & Demographics Spearman rank sum correlation; N=162

26. Psychosocial Factors

27. Diet, Physical Activity & A1c

28. Perceived Diabetes and Dietary Competence (PDDC) • 20 items; 3 subscales; internal reliability 0.84 - 0.85 * • Associations of PDDC and other psychosocial variables with A1c (N=186) • Negative Dietary Competence r=0.24 (p=.001) • Negative Diabetes Control r=0.20 (p=.006) • Problem Areas in Diabetes r=0.20 (p=.006) • Social Barriers r=0.24 (p=.001) • Perceived Stress Scale r=0.16 (p=.03) * Samuel-Hodge CD et al., Diabetes Educ 28:979-988, 2002

29. In Summary… • Social barriers were associated with measures of metabolic control (A1c) and quality of social relationships (and HRQOL) • Strong ties / social contacts relate to A1c and dietary behaviors; no relationship with social support • The relationship between social relationships and disease management is complex.

30. Familial Multiple Care-giving Roles • 12 items; 2 subscales; internal reliability 0.72-0.76 • Sample items: • Taking care of family and friends interferes with caring for myself. • Being available for family and friends is important to me. • It’s hard to say “no” when friends and family come to me for help. Samuel-Hodge CD, et al., Ethn Dis 2005; 15:436-443

31. MC Scales & Psychosocial Measures

32. Relationship with Self-Care Behaviors Comparison of means* (n=298) • Women who reported they were not following a diet for diabetes also reported more people who regularly depend on them for help/support (p< .05) • No other significant findings with diet or PA

33. Multiple Care-giving and Family In summary … • Multiple care-giving role barriers were positively associated with: • Number of children in the home • Number of adults in the home • No association between care-giving barriers and the number of people who are regularly provided with help or support • Barriers associated with dietary behaviors

34. In Summary… Is there more stress/strain when the number of people who are provided with help/support increases? • While the number of people helped/supported was not associated with MC-barriers, it was associated with stress level, and negative perceptions of dietary competence and diabetes control

35. In Summary… Difficulty saying ‘no’ to family and friends seems to be related to many negative psychosocial outcomes • Difficulty saying ‘no’ was associated with: • Higher stress • Higher perceived self-care barriers • A reduced sense of well-being (mental and social) • Same relationships found with care-giving barriers

36. Family as the Behavioral Context • Research among Latinos with type 2 • Patients in families that were more cohesive had better diet and exercise habits • Family variables accounted for most variance in both depressiveaffect and anxiety • Research among African Americans • Family functioning (conflict, cohesion) was associated with A1c

37. So … What Now?

38. How Can Interventions Be Designed to Fit the Socio-Cultural Context?

39. Recent Interventions Among Populations of Color • Approaches/Strategies: (secondary prevention) • Peer counselors / Lay Advisors/ Community Health Workers • Adherence to clinical guidelines/standards • Case Management • Frequent follow-up contacts (phone, home or clinic visits) • Group education/skills training • Provision of medications or glucose self-monitoring supplies

40. What Do We Know? Evidence from RCTs in type 2 diabetes: • In the short-term you can improve … • Knowledge, SMBG skills, and self-reported diet • Glycemic control more readily than PA and weight • Group education is effective for lifestyle interventions • Patient interaction/collaboration is more effective than a didactic approach for weight loss, lipid or glycemic control • Regularreinforcement is important

41. What Don’t We Know? • How psychosocial factors influence changes in behaviors, metabolic control and other outcomes • How to design the optimal long-term and maintenance interventions – content, frequency of contacts, or method of delivery • How to achieve the ideal self-management intervention … • acceptable to participants • feasible in a variety of settings • effective in the long-term • relatively low cost and cost-effective

42. Diabetes Cultural Translation Key Factors: • Listen to the words and stories of those affected (qualitative research) • Identify and measure culturally relevantfactors that influence diabetes self-care • Develop culturally appropriate behavior change and skill-building strategies • Let community voices (storytelling) enhance behavior change strategies

43. Diabetes Cultural Translation Key Factors (cont …) • Increase the visibility of positive role models and exemplars • Train Community Diabetes Advocates (linking patients to community resources) • Strengthen informal support systems • Test the effectiveness of family-based interventions for adults

44. For every human problem, there is a neat, simple solution, and it is always wrong. H.L. Mencken