Transcript Social and Familial Influences_Carmen

Social and Familial Influences on
Chronic Disease Management
among African Americans
Carmen D. Samuel-Hodge, PhD, MS, RD
April 2, 2007
Today’s Presentation
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Context – Focus on type 2 diabetes
Social and Familial Factors
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Social Relationships
Family Interactions
Social Stressors
Implications for Self-Management
Interventions
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
Who’s Living with Diabetes?
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20.8 million people – 7.0% of the US
population (all ages)
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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
Who’s Living with Diabetes?
Race/Ethnicity
Prevalence
Non-Hispanic whites
8.7%
Non-Hispanic blacks
13.3%
Hispanic/Latino
Americans
American Indians &
Alaska Natives (IHS)
9.5%
15.1%
Source: American Diabetes Association, 2005 estimates (> 20 y)
African Americans
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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:
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Diabetes-related blindness (2 times more
likely)
Lower limb amputations (1.5-2.5 times)
Kidney failure (2.6-5.6 times)
Metabolic Control – The Big Picture
Hemoglobin A1c < 7%
37.0%
Blood Pressure < 130/80
35.8%
Total cholesterol < 200
48.2%
% reaching all 3
recommended goals
7.3%
Saydah SH et al., JAMA 291:335-342, 2004 (NHANES 1999-2000)
Lifestyle Behaviors
Physical Activity
 Recommended –
> 5 episodes/week
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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
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62% ate < 5 servings
of fruits/ vegetables
per day
Nelson KM, et al., Diabetes Care 25:1722-1728, 2002
Wickedness of the Problem
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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.
Factors in Diabetes Self-Management
Socio-Demographic
Factors
 Income
 Education
 Age
 Employment status
Biological Factors
 Diabetes type/duration
 Medical history/ status
Social/Environmental
Factors
 Barriers to self-care
 Social support
 Economic factors
 Community resources
Psychological Factors
 Self-efficacy
 Regimen/Coping skills
 Attitudes and Beliefs
Diabetes Self-Management – Diet, physical activity, blood
glucose testing, foot care, taking medication
Ecological Model of Health Behavior
Community & Policy
Culture, System,
Group
Family, Friends,
Small Group
Individual
Biological
Psychological
Fisher EB et al., Diabetes Care 25:599-600, 2002
Social and Familial
Influences
Living with Diabetes…
(What People Say)
Qualitative Research
Influences on day-to-day selfmanagement of type 2 diabetes among
African American women*
*Samuel-Hodge et al., Diabetes Care 23:928-933, 2000
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
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
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
Similar Views From Other
Populations of Color
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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
Similar Views From Other
Populations of Color
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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
How Do We Quantify
These Views?
Measurement Instruments
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Strong Ties/Close Contacts
Social Barriers
Perceived Diabetes & Dietary
Competence (PDDC)
Multi-Caregiver Role (Family)
Social Contact / Strong Ties
4 items; 4-point frequency responses
1.
How often are you bothered by not having a close
companion?
2.
How often are you bothered by not seeing enough of
people you feel close to?
3.
How often are you bothered by not having enough
close friends?
4.
How often are you bothered by not having someone
who shows you love and affection?
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How many relatives do you have that you feel close
to?
Dean AE and Lin N, J Nervous Mental Dis 165:403-417, 1977
Social Support for Diabetes
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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
Social Barriers
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5 items ; 4-point Likert scale responses
Measure problems related to
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Money (finances)
Street crime
Housing
Family
Family care-giving responsibilities
* Hill-Briggs F. et al., J Gen Intern Med 2002;17:412-19
Household Characteristics &
Demographics
# Close Relatives
# Children in home
# Adults in home
Age
Education
Social
Support
-0.09
0.13
Social Contact/
Strong Ties
0.32 (p< .0001)
0.16 (p< .05)
0.31 (p< .001) 0.10
0.10
-0.24 (p< .01)
-0.12
0.23 (p< .01)
Spearman rank sum correlation; N=162
Psychosocial Factors
Social support Social Contact/
Strong Ties
Social Barriers
Social support
0.16
--
-0.35 (p < .0001)
0.07
PAID
0.06
-0.29 (p< .001)
PSS
-0.07
-0.43 (p < .0001)
PDDC- Negative
Diabetes control
-0.05
-0.32 (p < .0001)
Diet, Physical Activity & A1c
Diet Stage-amount
Social
Support
0.08
Social Contact/
Strong Ties
0.24 (p< .01)
Diet Stage-fat
0.03
-0.01
Physical activity stage
0.06
0.13
# Days following diet for -0.08
diabetes
0.02
A1c
0.12
-0.21 (p< .01)
Perceived Diabetes and Dietary
Competence (PDDC)
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20 items; 3 subscales; internal reliability 0.84 - 0.85 *
Associations of PDDC and other psychosocial
variables with A1c (N=186)
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Negative Dietary Competence
Negative Diabetes Control
Problem Areas in Diabetes
Social Barriers
Perceived Stress Scale
r=0.24 (p=.001)
r=0.20 (p=.006)
r=0.20 (p=.006)
r=0.24 (p=.001)
r=0.16 (p=.03)
* Samuel-Hodge CD et al., Diabetes Educ 28:979-988, 2002
In Summary…
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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.
Familial Multiple Care-giving Roles
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12 items; 2 subscales; internal reliability 0.72-0.76
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Sample items:
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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
MC Scales & Psychosocial Measures
N=299
MC-Role
MCBarriers
0.31
Stress level (past month)
0.08
p< .0001
Positive diabetes
competence
0.17
-0.12
p< .01
p< .05
0.35
Perceived negative
control of diabetes
Negative Dietary
Competence
-0.08
p< .0001
-0.03
0.33
Social well-being
0.00
Mental well-being
0.05
p<.0001
-0.36
p< .0001
-0.40
p< .0001
Relationship with Self-Care Behaviors
Comparison of means* (n=298)
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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
Multiple Care-giving and Family
In summary …
 Multiple care-giving role barriers were positively
associated with:
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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
In Summary…
Is there more stress/strain when the number of
people who are provided with help/support
increases?
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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
In Summary…
Difficulty saying ‘no’ to family and friends seems to
be related to many negative psychosocial
outcomes
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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
Family as the Behavioral Context
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Research among Latinos with type 2
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Patients in families that were more cohesive had
better diet and exercise habits
Family variables accounted for most variance in
both depressive affect and anxiety
Research among African Americans
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Family functioning (conflict, cohesion) was
associated with A1c
So … What Now?
How Can Interventions Be
Designed to Fit the SocioCultural Context?
Recent Interventions Among
Populations of Color
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Approaches/Strategies: (secondary prevention)
1. Peer counselors / Lay Advisors/ Community
2.
3.
4.
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6.
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 selfmonitoring supplies
What Do We Know?
Evidence from RCTs in type 2 diabetes:
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In the short-term you can improve …
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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
Regular reinforcement is important
What Don’t We Know?
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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 …
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acceptable to participants
feasible in a variety of settings
effective in the long-term
relatively low cost and cost-effective
Diabetes Cultural Translation
Key Factors:
 Listen to the words and stories of those
affected (qualitative research)
 Identify and measure culturally relevant
factors that influence diabetes self-care
 Develop culturally appropriate behavior
change and skill-building strategies
 Let community voices (storytelling)
enhance behavior change strategies
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
For every human problem,
there is a neat, simple
solution, and it is always
wrong.
H.L. Mencken