Social and Familial Influences Social and Familial Influences on Chronic Disease on Chronic Disease

Management among African Management among African AmericansAmericans

Carmen D. Samuel-Hodge, PhD, MS, Carmen D. Samuel-Hodge, PhD, MS, RDRD

April 2, 2007April 2, 2007

Today’s PresentationToday’s Presentation

Context – Focus on type 2 diabetesContext – Focus on type 2 diabetes Social and Familial FactorsSocial and Familial Factors

Social RelationshipsSocial Relationships Family InteractionsFamily Interactions Social StressorsSocial Stressors

Implications for Self-Management Implications for Self-Management InterventionsInterventions

Wicked ProblemsWicked Problems

Problems that are illusive or Problems that are illusive or difficult to pin down and difficult to pin down and influenced by a constellation of influenced by a constellation of complex social and political complex social and political factorsfactorsSource: 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

Who’s Living with Diabetes?Who’s Living with Diabetes?

20.8 million people – 20.8 million people – 7.0%7.0% of the US of the US population (all ages)population (all ages) Age Age >> 20 years: 20 years: 9.6%9.6% Age 60 and older:Age 60 and older: 20.9% 20.9%

Diagnosed – 14.6 millionDiagnosed – 14.6 million

Undiagnosed 6.2 millionUndiagnosed 6.2 million

Incidence (new cases/year): Incidence (new cases/year): 1.5 1.5 millionmillion people people >> 20 years 20 years

Source: American Diabetes Association, 2005 estimates

Who’s Living with Diabetes?Who’s Living with Diabetes?Race/EthnicityRace/Ethnicity PrevalencPrevalenc

ee

Non-Hispanic whitesNon-Hispanic whites 8.7%8.7%

Non-Hispanic blacksNon-Hispanic blacks 13.3%13.3%

Hispanic/Latino Hispanic/Latino AmericansAmericans

9.5%9.5%

American Indians & American Indians & Alaska Natives (IHS)Alaska Natives (IHS)

15.1%15.1%

Source: American Diabetes Association, 2005 estimates (> 20 y)

African AmericansAfrican Americans

1.81.8 times more likely to have diabetes times more likely to have diabetes than non-Hispanic whitesthan non-Hispanic whites

African American African American and other minority and other minority women have 2-4 times higher prevalencewomen have 2-4 times higher prevalence

Compared to non-Hispanic whites, Compared to non-Hispanic whites, African Americans suffer African Americans suffer disproportionately:disproportionately: Diabetes-related blindness Diabetes-related blindness (2 times more (2 times more

likely)likely) Lower limb amputationsLower limb amputations (1.5-2.5 times) (1.5-2.5 times) Kidney failureKidney failure (2.6-5.6 times) (2.6-5.6 times)

Metabolic Control – The Big Metabolic Control – The Big PicturePicture

Saydah SH et al., JAMA 291:335-342, 2004 (NHANES 1999-2000)

Hemoglobin A1c < 7%Hemoglobin A1c < 7% 37.0%37.0%

Blood Pressure < 130/80Blood Pressure < 130/80 35.8%35.8%

Total cholesterol < 200Total cholesterol < 200 48.2%48.2%

% reaching all 3 % reaching all 3 recommended goalsrecommended goals

7.3%7.3%

Lifestyle BehaviorsLifestyle Behaviors

Physical ActivityPhysical Activity Recommended – Recommended –

>> 5 episodes/week 5 episodes/week About About 70%70% do do notnot

meet recommended meet recommended levellevel

levels of activity levels of activity associated with associated with income and educationincome and education

Dietary BehaviorDietary Behavior Almost 2/3 Almost 2/3

consumedconsumed >30% >30% daily calories from daily calories from fat; > 10% fat; > 10% saturated fatsaturated fat

62%62% ate < 5 ate < 5 servings of fruits/ servings of fruits/ vegetables per dayvegetables per day

Nelson KM, et al., Diabetes Care 25:1722-1728, 2002

Wickedness of the ProblemWickedness of the Problem Factors associated with disease managementFactors associated with disease management

Access to careAccess to care Quality of careQuality of care Knowledge/skill deficitsKnowledge/skill deficits Beliefs about diabetesBeliefs about diabetes ((Psychological Psychological

factorsfactors)) Socio-cultural factorsSocio-cultural factors Self-management behaviorsSelf-management behaviors – diet, physical – diet, physical

activity, blood glucose monitoring, foot care, activity, blood glucose monitoring, foot care, etc.etc.

Factors in Diabetes Self-Factors in Diabetes Self-ManagementManagement

Social/Environmental Social/Environmental FactorsFactors

Barriers to self-care Social support Economic factors Community resources

Socio-Demographic Socio-Demographic FactorsFactors

Income Education Age Employment status

Diabetes Self-ManagementDiabetes Self-Management – – Diet, physical activity, blood glucose testing, foot care, taking medication

Diabetes Self-ManagementDiabetes Self-Management – – Diet, physical activity, blood glucose testing, foot care, taking medication

Psychological Psychological FactorsFactors Self-efficacy Regimen/Coping skills Attitudes and Beliefs

Biological FactorsBiological Factors Diabetes type/duration Medical history/ status

Ecological Model of Health Ecological Model of Health BehaviorBehavior

Fisher EB et al., Diabetes Care 25:599-600, 2002

Community & Policy

Culture, System, Group

Family, Friends, Small Group

IndividualBiological

Psychological

Social and Familial Social and Familial InfluencesInfluences

Living with Diabetes…Living with Diabetes…

(What People Say)(What People Say)

Qualitative ResearchQualitative Research

*Samuel-Hodge et al., Diabetes Care 23:928-933, 2000

Influences on day-to-day self-Influences on day-to-day self-management of type 2 diabetes management of type 2 diabetes

among African American womenamong African American women**

Qualitative FindingsQualitative FindingsDominant Theme 1Dominant Theme 1 Spirituality Spirituality as an important factor in general as an important factor in general

health, disease adjustment, and copinghealth, disease adjustment, and coping

“ “I’ve had 3 heart attacks. I just I’ve had 3 heart attacks. I just ask God to give me the strength to ask God to give me the strength to do the things that I have to do. do the things that I have to do. Sometimes I think if I would stop Sometimes I think if I would stop and sit down long enough, I would and sit down long enough, I would die. But I’m thankful for having die. But I’m thankful for having God on my side.”God on my side.”

*Samuel-Hodge et al., Diabetes Care 23:928-933, 2000

Qualitative FindingsQualitative FindingsDominant Theme 2Dominant Theme 2 General life stress General life stress andand multi- multi-

caregiving responsibilities caregiving responsibilities interfering with disease managementinterfering with disease management

““What causes me a lot of problem, What causes me a lot of problem, gets my nerves out of shape and gets my nerves out of shape and cause my diabetes to flare up [is cause my diabetes to flare up [is that] I live around family. And they that] I live around family. And they come to my house, you know …when come to my house, you know …when they get off the school bus, here they get off the school bus, here they come. When they get out from they come. When they get out from work, here they come.”work, here they come.”

*Samuel-Hodge et al., Diabetes Care 23:928-933, 2000

Qualitative FindingsQualitative FindingsDominant Theme 3Dominant Theme 3 Impact of diabetes Impact of diabetes manifested in manifested in

feelings offeelings of dietary deprivation, dietary deprivation, physical and emotional “tiredness”, physical and emotional “tiredness”, “worry”, and fear of complications”“worry”, and fear of complications”

“ “When I think about the people that When I think about the people that … already have diabetes and they … already have diabetes and they lose their limbs, you know. lose their limbs, you know. Sometimes I get kind of numb – my Sometimes I get kind of numb – my legs. And I’m worried am I next. It legs. And I’m worried am I next. It bears on your mind a lot.”bears on your mind a lot.”

*Samuel-Hodge et al., Diabetes Care 23:928-933, 2000

Similar Views From Other Similar Views From Other Populations of ColorPopulations of Color

Native AmericansNative Americans

“ “I just want to say that diabetes is a I just want to say that diabetes is a real emotional issue. My dad was real emotional issue. My dad was diabetic, his brother was, his sister diabetic, his brother was, his sister was and she had an amputation. As was and she had an amputation. As a result, we carry a lot of pain.”a result, we carry a lot of pain.”

Struthers R et al., Qualitative Health Res 13:1094-1115, 2003

Similar Views From Other Similar Views From Other Populations of ColorPopulations of Color

Native AmericansNative Americans (on ‘diabetes prevention’) (on ‘diabetes prevention’)

““Some workers from IHS tell us all you have to do Some workers from IHS tell us all you have to do is exercise and eat right. Eat fresh fruits and is exercise and eat right. Eat fresh fruits and vegetables … Where do they think they are? You vegetables … Where do they think they are? You know it is totally unrealistic because our know it is totally unrealistic because our reservation living conditions are sad, our families reservation living conditions are sad, our families are pitiful … It makes me angry to know they can are pitiful … It makes me angry to know they can say that to us in English, and you try to tell that say that to us in English, and you try to tell that to the person that has 12 kids to take care of, to the person that has 12 kids to take care of, probably no vehicle, limited income … we have probably no vehicle, limited income … we have all these challenges that we face every day. So all these challenges that we face every day. So I’m thinking, ‘Get real here’.”I’m thinking, ‘Get real here’.”

Struthers R et al., Qualitative Health Res 13:1094-1115, 2003

How Do We Quantify How Do We Quantify These Views?These Views?

Measurement Measurement InstrumentsInstruments

Strong Ties/Close ContactsStrong Ties/Close Contacts Social BarriersSocial Barriers Perceived Diabetes & Dietary Perceived Diabetes & Dietary

Competence (PDDC) Competence (PDDC) Multi-Caregiver Role (Family)Multi-Caregiver Role (Family)

Social Contact / Strong Social Contact / Strong TiesTies

4 items; 4-point frequency responses4 items; 4-point frequency responses

1.1. How often are you bothered by not having a How often are you bothered by not having a close companion?close companion?

2.2. How often are you bothered by not seeing How often are you bothered by not seeing enough of people you feel close to?enough of people you feel close to?

3.3. How often are you bothered by not having How often are you bothered by not having enough close friends?enough close friends?

4.4. How often are you bothered by not having How often are you bothered by not having someone who shows you love and affection?someone who shows you love and affection?

How many relatives do you have that you feel How many relatives do you have that you feel close to?close to?

Dean AE and Lin N, J Nervous Mental Dis 165:403-417, 1977

Social Support for Social Support for DiabetesDiabetes

Diabetes Family Behavior Checklist II Diabetes Family Behavior Checklist II – adapted– adapted

FrequencyFrequency of 12 behaviors (praise, of 12 behaviors (praise, nag, help, etc.)nag, help, etc.)

HelpfulnessHelpfulness of behaviors of behaviors Score = Cross product (frequency X Score = Cross product (frequency X

helpfulness)helpfulness)

McCaul et al., Med Care 25:868-881, 1987

Social BarriersSocial Barriers

5 items ; 4-point Likert scale 5 items ; 4-point Likert scale responsesresponses

Measure problems related toMeasure problems related to Money (finances)Money (finances) Street crimeStreet crime HousingHousing FamilyFamily Family care-giving responsibilitiesFamily care-giving responsibilities

* Hill-Briggs F. et al., J Gen Intern Med 2002;17:412-19

Household Characteristics & Household Characteristics & DemographicsDemographics

Social Social SupportSupport

Social Social Contact/ Contact/

Strong TiesStrong Ties

# Close Relatives# Close Relatives -0.09-0.09 0.320.32 (p< .0001)(p< .0001)

# Children in # Children in homehome

0.130.13 0.160.16 (p< .05)(p< .05)

# Adults in home# Adults in home 0.31 0.31 (p< .001)(p< .001)

0.100.10

AgeAge 0.100.10 -0.12-0.12

EducationEducation -0.24-0.24 (p< .01)(p< .01)

0.230.23 (p< .01)(p< .01)

Spearman rank sum correlation; N=162

Psychosocial FactorsPsychosocial Factors

Social Social supportsupport

Social Social Contact/ Contact/ Strong TiesStrong Ties

Social BarriersSocial Barriers 0.160.16 -0.35-0.35 (p (p < .0001)< .0001)

Social supportSocial support ---- 0.07 0.07

PAIDPAID 0.060.06 -0.29-0.29 (p< .001)(p< .001)

PSSPSS -0.07-0.07 -0.43-0.43 (p (p < .0001)< .0001)

PDDC- Negative PDDC- Negative Diabetes controlDiabetes control

-0.05-0.05 -0.32-0.32 (p (p < .0001)< .0001)

Diet, Physical Activity & A1cDiet, Physical Activity & A1c

Social Social SupportSupport

Social Social Contact/ Contact/ Strong TiesStrong Ties

Diet Diet Stage-amountStage-amount 0.080.08 0.24 0.24 (p< .01) (p< .01)

Diet Stage-fatDiet Stage-fat 0.030.03 -0.01-0.01

Physical activity stagePhysical activity stage 0.060.06 0.130.13

# Days following diet # Days following diet for diabetesfor diabetes

-0.08-0.08 0.020.02

A1cA1c 0.120.12 -0.21-0.21 (p< .01)(p< .01)

Perceived Diabetes and Perceived Diabetes and Dietary Competence (PDDC)Dietary Competence (PDDC)

20 items; 3 subscales; internal reliability 0.84 - 0.85 *20 items; 3 subscales; internal reliability 0.84 - 0.85 *

* Samuel-Hodge CD et al., Diabetes Educ 28:979-988, 2002

Associations of PDDC and other Associations of PDDC and other psychosocial variables with psychosocial variables with A1c (A1c (N=186)N=186) Negative Dietary CompetenceNegative Dietary Competence r=r=0.24 0.24

(p=.001)(p=.001) Negative Diabetes ControlNegative Diabetes Control r=r=0.20 0.20

(p=.006)(p=.006) Problem Areas in DiabetesProblem Areas in Diabetes r=r=0.200.20

(p=.006)(p=.006) Social BarriersSocial Barriers r=r=0.240.24

(p=.001)(p=.001) Perceived Stress ScalePerceived Stress Scale r=r=0.16 0.16

(p=.03)(p=.03)

In Summary…In Summary…

Social barriersSocial barriers were associated with were associated with measures of metabolic control (A1c) measures of metabolic control (A1c) and quality of social relationships (and quality of social relationships (and and HRQOLHRQOL))

Strong ties / social contactsStrong ties / social contacts relate to relate to A1c and dietary behaviors; no A1c and dietary behaviors; no relationship with social supportrelationship with social support

The relationship between The relationship between social social relationshipsrelationships and disease and disease management is complex. management is complex.

Familial Multiple Care-giving Familial Multiple Care-giving RolesRoles

12 items; 2 subscales; internal reliability 0.72-0.7612 items; 2 subscales; internal reliability 0.72-0.76

Samuel-Hodge CD, et al., Ethn Dis 2005; 15:436-443

Sample items:Sample items: Taking care of family and friends interferes Taking care of family and friends interferes

with caring for myself. with caring for myself. Being available for family and friends is Being available for family and friends is

important to me. important to me. It’s hard to say “no” when friends and family It’s hard to say “no” when friends and family

come to me for help.come to me for help.

MC Scales & Psychosocial MC Scales & Psychosocial MeasuresMeasures

N=299N=299MC-RoleMC-Role MC-MC-

BarriersBarriersStress levelStress level (past (past month)month)

0.080.08 0.310.31p< .0001p< .0001

Positive Positive diabetesdiabetes competencecompetence

0.170.17p< .01p< .01

-0.12-0.12p< .05p< .05

Perceived negative Perceived negative controlcontrol of diabetes of diabetes

-0.08-0.08 0.350.35p< .0001p< .0001

Negative Negative Dietary Dietary CompetenceCompetence

-0.03-0.03 0.330.33p<.0001p<.0001

Social well-beingSocial well-being 0.000.00 -0.36-0.36p< .0001p< .0001

Mental well-beingMental well-being 0.050.05 -0.40-0.40p< .0001p< .0001

Relationship with Self-Care Relationship with Self-Care BehaviorsBehaviors

Comparison of means* (n=298)Comparison of means* (n=298)

Women who reported they were Women who reported they were notnot following a diet for diabetes also reported following a diet for diabetes also reported moremore people who regularly depend on people who regularly depend on them for help/support (p< .05)them for help/support (p< .05)

No other significant findings with diet or No other significant findings with diet or PAPA

Multiple Care-giving and Multiple Care-giving and FamilyFamily

In summary …In summary … Multiple care-giving role barriers were Multiple care-giving role barriers were

positively associated with:positively associated with: Number of children in the homeNumber of children in the home Number of adults in the homeNumber of adults in the home

No association between care-giving No association between care-giving barriers and the number of people who are barriers and the number of people who are regularly provided with help or supportregularly provided with help or support

Barriers associated with dietary behaviorsBarriers associated with dietary behaviors

In Summary…In Summary…

While the While the number of peoplenumber of people helped/supported was helped/supported was notnot associated associated with MC-barriers, it was associated with MC-barriers, it was associated with with stressstress level, and level, and negative negative perceptionsperceptions of dietary of dietary competencecompetence and diabetes and diabetes controlcontrol

Is there more stress/strain when the number of people who are provided with help/support

increases?

In Summary…In Summary…

Difficulty saying ‘no’ Difficulty saying ‘no’ was associated with: was associated with: Higher stressHigher stress Higher perceived self-care Higher perceived self-care barriersbarriers A A reduced sense of well-being (mental reduced sense of well-being (mental

andand social) social) Same relationships found withSame relationships found with care- care-

giving barriersgiving barriers

Difficulty saying ‘no’ to family and friends seems to be related to many negative psychosocial

outcomes

FamilyFamily as the Behavioral as the Behavioral ContextContext

Research among Research among LatinosLatinos with type 2 with type 2 Patients in families that were more Patients in families that were more cohesivecohesive

had better diet and exercise habits had better diet and exercise habits Family variables accounted for most variance Family variables accounted for most variance

in both in both depressivedepressive affectaffect and and anxietyanxiety Research among Research among African Americans African Americans

Family functioning (Family functioning (conflict, cohesionconflict, cohesion) was ) was associated with A1cassociated with A1c

So … What Now?So … What Now?

How Can Interventions Be How Can Interventions Be Designed to Fit the Socio-Designed to Fit the Socio-

Cultural Context?Cultural Context?

Recent Interventions Among Recent Interventions Among Populations of ColorPopulations of Color

Approaches/StrategiesApproaches/Strategies: : (secondary (secondary prevention)prevention)1.1. Peer counselorsPeer counselors / Lay Advisors/ / Lay Advisors/

Community Health WorkersCommunity Health Workers2.2. Adherence toAdherence to clinical clinical

guidelines/standards guidelines/standards 3.3. Case ManagementCase Management 4.4. Frequent Frequent follow-up follow-up contacts (phone, home contacts (phone, home

or clinic visits)or clinic visits)5.5. Group education/skills trainingGroup education/skills training6.6. Provision of medications or glucose self-Provision of medications or glucose self-

monitoring suppliesmonitoring supplies

What What DoDo We Know? We Know?Evidence from RCTs in type 2 diabetes:Evidence from RCTs in type 2 diabetes: In the short-term you can improve …In the short-term you can improve …

Knowledge, SMBG skills, and self-reported dietKnowledge, SMBG skills, and self-reported diet Glycemic control more readily than PA and weightGlycemic control more readily than PA and weight

Group educationGroup education is effective for lifestyle is effective for lifestyle interventionsinterventions

Patient interaction/collaborationPatient interaction/collaboration is is more effective than a didactic approach more effective than a didactic approach for weight loss, lipid or glycemic controlfor weight loss, lipid or glycemic control

RegularRegular reinforcement reinforcement is importantis important

What What Don’tDon’t We Know? We Know? HowHow psychosocial factors psychosocial factors influence influence

changeschanges in behaviors, metabolic control and in behaviors, metabolic control and other outcomes other outcomes

How to design the optimal How to design the optimal long-term long-term and and maintenancemaintenance interventions – content, interventions – content, frequency of contacts, or method of frequency of contacts, or method of delivery delivery

How to achieve the How to achieve the ideal self-ideal self-management intervention …management intervention … acceptableacceptable to participants to participants feasiblefeasible in a variety of settings in a variety of settings effectiveeffective in the in the long-term long-term relatively relatively low costlow cost and and cost-effectivecost-effective

Diabetes Cultural Diabetes Cultural TranslationTranslation

Key FactorsKey Factors:: Listen to the Listen to the wordswords and and storiesstories of of

those affected (those affected (qualitativequalitative research) research) Identify and measure Identify and measure culturally culturally

relevantrelevant factorsfactors that influence that influence diabetes self-care diabetes self-care

Develop culturally appropriate Develop culturally appropriate behavior behavior changechange and skill-building and skill-building strategies strategies

Let Let community voicescommunity voices (storytelling) (storytelling) enhance behavior change strategiesenhance behavior change strategies

Diabetes Cultural Diabetes Cultural TranslationTranslation

Key FactorsKey Factors (cont …) (cont …) Increase the visibility of Increase the visibility of positive role positive role

modelsmodels and exemplars and exemplars Train Community Diabetes Train Community Diabetes AdvocatesAdvocates

(linking patients to community (linking patients to community resources)resources)

Strengthen informal Strengthen informal support systemssupport systems Test Test the effectiveness ofthe effectiveness of family- family-

based interventions for adultsbased interventions for adults

For every human For every human problem, there is a neat, problem, there is a neat, simple solution, and it is simple solution, and it is

always wrong.always wrong.

H.L. MenckenH.L. Mencken