Transcript Doing community-based health literacy research

Addressing minority health access
through community-based
health literacy research
Susan J. Shaw, Ph.D., University of
Arizona
Today’s Aims
 Theoretical overview
 Doing community-based health literacy research
 Health literacy findings for minority health access
 Barriers to medication adherence
 Food insecurity
 Recommendations
 Conclusions
Theoretical approach
 Political economy
 Culture as meaning:
 Changes over time (think slang, sagging, gender
norms)
 Permeable boundaries
 Multiple, contradictory and overlapping
 Culture as practice: exploring cultural
differences by looking at everyday behavior
Culture: Two definitions
 “the integrated pattern of human behavior that
includes actions, communication, beliefs, values
and institutions” (NCCC 2001)
 Learned patterns of thought (knowledge) and
behavior shared by a social group and acquired
through acculturation
Why culture and health literacy?
 What is health literacy?
 the ability to understand and act on a doctor’s instructions
 Culture influences health and health care:
 What causes disease and illness
 What is an appropriate treatment
 How to take care of yourself and prevent disease
 How the human body works (human physiology)
 What is appropriate doctor and patient conduct
 Perceptions of symptoms and emotional states.
“There is no
culture-free way to
think about disease”
-including
the culture of science
Doing community-based
health literacy research
1.
Supporting medical interpreters
2.
Community-based research design
3.
Community buy-in is critical
4.
Building vs. draining expertise
5.
Doing community-based research with limited
resources
Community-based Research Design
Quantitative
Methods
Data
Collection
Epi Surveys
CHC Medical Chart
Pts &
HCPs
Data
Collection
Data
In-depth interviews,
focus groups, home
visits, chronic disease
diaries
Qualitative
Methods
Community-based research design
 Focusing on topics generated by clinic staff/patients
 Prospective/longitudinal design, not experimental
 Designing research protocols in conjunction with clinic
 screening methods were developed in response to input from
clinical staff (medical assistants and medical interpreters)
 Staff identified methods to protect participant confidentiality
and promote trust
Community buy-in is critical
 Clinic staff (including administrative supervisors)
provided full endorsement of research and showed
great interest in research topic and process
 Hiring clinic staff provides opportunities to expand
skills & experiences
 Community members feel that the study is
addressing a real community need; one they can
relate to from personal experience.
Building vs. draining expertise
 Pros and cons of hiring clinic’s medical interpreters as
outreach interviewers
 Building research expertise among trained interpreters
(bilingual, bicultural)
 Draining expertise from clinic (experienced interviewers)
Where to cut?
Community-based research with limited resources
 Research design originally included 5 ethnic groups
 After a 29% budget cut, could not sustain translation &
personnel costs
 How to decide which group to exclude?
 Actively seeking funding to include them in future research
Longer term research goals
 Sustain community involvement
 Ethnographic interviews to address new and
emerging community-identified themes
 Actively collaborate with community and
agency staff to:
 Build community capacity for research
 Transfer research staff to programs
 Integrate research tasks with EMR
Research site: Caring Health Center,
Springfield, MA
Caring Health Center Patient Population
White/
Other
Vietnamese
10%
•
•
•
•
Springfield: pop. 157,000
Section 330 community
health center
Medically underserved,
refugee resettlement area
>50% of CHC’s adult
patients require
translation services
Black
34%
Hispanic
37%
Methods Overview
 Multi-method design combining qualitative and
quantitative approaches to data collection
 Self-report survey (Baseline, 12 months)
 Health literacy
 Cancer screening attitudes
 Chronic disease self-management (diabetes, HTN)
 Medical Chart Abstraction (Baseline, 12 months)
Methods Overview
 Qualitative methods (subsample)
 Formative focus groups (n=47)
 In-depth interviews (n=35)
 Chronic Disease Diaries (n=15)
 Home Observations (n=12)
 Triangulation of qualitative data with survey data and
chart abstraction data
Instrument Development
 We adapted existing scales for health literacy and
acculturation for use in four ethnic groups (AfricanAmerican, white, Latino, and Vietnamese) by:
 Conducting focus groups with members of each
ethnic group to generate culturally relevant terms
 Translating existing scales into Spanish and
Vietnamese where needed
 Pre-testing revised scales with members of the target
populations.
Sample Overview (n=273)
•
83% of Latino (PR) participants speak
Spanish at home
•
34% of participants had <8th grade ed.
•
67% rated their health as fair to poor
•
59% are disabled
•
74% estimate their household income
between $400-1,200/mo.
100%
n=40
80%
n=64
white
60%
n=87
40%
African-Ameri
Vietnamese
Latino
20%
n=100
0%
Total sample
Health literacy findings
on minority health access
 Barriers to medication adherence
 Fears and beliefs about medications
 Formulary changes
 Food insecurity
Fears and Beliefs about Medications
 Lack of trust
 “Denial that I’m sick”
 Fear of side effects
 Fear of addiction
Lack of trust in medicines
A: This is called Actoplus Met [oral diabetes med]. I don’t take it
regular either. I think I have a denial factor that I’m sick.
Q: So you don’t take your medication regularly?
A: I don’t.
Q: Why not?
A: Because I don’t really know if it does anything. It don’t seem to do
anything anyway. …I know my family’s after me to take it. My
daughter especially, she wants me to take it. But I just don’t feel
any differently when I do. And we don’t even know if the
medication is real or not real. I was just watching the episode on 60
Minutes about the fake medicine. That really opened my eyes and I
don’t like it. Who knows what it is?
Fear of side effects
“The first medication that she gave me I had to
leave them, because when I would take them I
would get a really bad reaction. I would get really
nervous, plus my heart would beat too fast! Pum
pum pum pum! And I would get so bad that I
wouldn’t take them. I took them twice and I didn’t
want them anymore.”
Fear of side effects
Q: I wanted to follow up on what you were telling me about when you
stopped taking your insulin for a year?
A: Yeah, my kidneys were failing and I swelled up like a balloon. And I said,
I’ve been on this insulin and I’m getting sick too. When I stopped taking my
insulin, my kidneys started working little by little. And now my kidneys are
working. I guess it was... probably the kind of insulin it was! Because [my]
doctor told me both my kidneys were failing. They was gonna be putting
me on dialysis, or a kidney transplant. And I told them I don’t want neither. I
said, when I’m meant to die, let me die, ‘cause I, I didn’t want to be on no
machine and I don’t want nobody else’s kidney. You know. And for some
reason, it’s like God gave me a second chance. I guess God gave me this
chance to look out for my family, I think.
More side effects
P2: ...my back hurts, it hurts to get up in the morning. I can't get out of bed
and I have arthritis in my spinal column. Everything would hurt for me, but
it wouldn't hurt that much. I don't like to take pills.
Q: And what is it that you don't like about taking your pills?
P2: I don't know. It's like I have a fear of how my body is going to react.
Maybe it’s from an experience that I had, of pills that I took and I felt, I don't
know, that it wasn't me. And I am afraid of that. …
P3: Let's just say it, there are pills that in one way make you better but in
another hurt you. Because even Advil is bad for your liver.
P4: True. The way that you take them and the quantity...
P3: It's no good, and you never know how much. …
P2: You are helping you there and hurting you here.
P3: That's how it is.
Fear of addiction
A: I don’t know if I’m right or wrong but it seems to me that us
black folk, we don’t tend to want to take a lot of medicine. We
don’t wanna become… My mother always [used to say], yeah,
you get addicted to this. You get addicted to that. Like, she
takes a sleeping pill but I don’t give it her. Her doctor
recommends it but I don’t give it to her every night because she
don’t need it every night. You know what I’m saying? She don’t
need it. You know, she’s 84 and she’s tired. She’ll go to sleep.
Now that she’s in the [beginning] forms of dementia, she
remembers, ‘I didn’t get my medicine’. And I say, ‘Mom, you
know, I don’t think you need it.’ I don’t know if that’s right or
wrong, but I don’t see the need for her to have to take a sleeping
pill every night.
Cost control measures:
Massachusetts health care reform
 Passed under Gov. Romney in 2006, MA health care reform
mandated individual health insurance coverage for all state
residents
 Minimally creditable coverage
 Fee (tax?) for those who are uninsured (~$3200/yr.)
 Expanded Medicaid (MassHealth) eligibility for children and some
special populations
 “The Connector”: the on-line state-run “exchange,” a marketplace
for health insurance plans
Massachusetts health care reform
in practice

Two years after implementation, costs exceeded estimates by $150m

Cost control measures:

Churning the rolls

Formulary changes

“Bureaucratic disentitlement” (Danz 2000)

Insurance coverage increased to 97+%, but

Racial/ethnic disparities in health coverage and access remain

7% of Black and 10% of Hispanic Springfield residents were uninsured in 2009,
compared to 5% of whites, and to 1.9% of all MA residents (MDPH 2009).
 Hispanics in Springfield were twice as likely as whites to report that they were
unable to see a doctor because of cost (MDPH 2010b).
Effects of formulary changes
Provider 2: One barrier … is health insurance. Because, you see, insurances,
some of them have specific medications they will pay for, like .... MassHealth
doesn’t cover this particular diabetic med … And so they have to switch to
something else, which doesn’t work as well.
Provider 3: That’s why they lose control. That’s when they lose track.
Provider 2: And then the patients are frustrated because they think, well, that
one used to work so well but they don’t pay for it.
Susan: And that’s when they lose control of their blood sugar?
Provider 3: The blood sugar, everything! The tracking, everything! Because
they change so much their medication so often they may be taking their meds
twice a day instead of once. They lose control. They get tired. They don’t want
to do it anymore.
Responses to formulary changes
 Hoarding pills
 Trading pills with friends
 Substitute over-the-counter for prescription
medications
Formulary changes & lack of trust
A: When I had the colonoscopy done... the doctors prescribed me that
Prevacid. I took it to the pharmacy, and the pharmacy says the insurance
won’t cover it. And that seems like, well why would they give me a
prescription if you can’t honor it? Either it costs too much or you’re
second-guessing the doctor and you’re thinking I don’t need it. So, that’s
counter-productive to me. I think the insurance company should…not look
at it from a dollar sign point of view. [They should] call the doctor who
prescribes the pill and talk with him, and [that would] cut down on me
going back and forth and in the meantime I have nothing to take in place
of it. So I’m losing valuable time and then I have to suffer, until the
problem [is] rectified.
Food insecurity is widespread
70
60
50
40
%
30
20
10
0
Food insecure
Food insecure people have less access
to health care…
Percent unable to see a doctor
because of cost in last 12 months
20
18
16
14
12
10
8
6
4
2
0
50
% unable to afford
medication/supplies in last 12
months
16.8
40
30
48.7
5.8
20
10
12.3
0
Food insecure
Food secure
χ2=6.39; p<.04
Food insecure
Food secure
χ2=44.42; p<.0001
…are more likely to be
overweight/obese,
Percent of Participants who are
Overweight
Food Secure
Food Insecure
40
35
30
25
20
15
10
5
0
Normal
(<25)
Overweight
(25.1-30)
Obese
(30.1-35)
Morbidly
obese
(>35.1)
84.9% of participants
who are food insecure
are overweight, obese
or morbidly obese
(BMI >25)
…and have more complications from
diabetes
Percent of Reported Complications
Food Secure
Food Insecure
70
60
50
40
30
20
10
0
Problems
with
circulation
Frequent Neuropathy Needs to
Infections
lose weight
Heart
Disease
Impotence
Food insecurity and
medication nonadherence
A: See, right now I got a problem. My ex-wife lost her job,
right? And I got kids by her, right? So I’ve been trying to
stretch my money buying groceries over there, helping her
out, and buying groceries for me, but I, I ain’t got enough
for myself, you know. … So, so’s what I do is buy one big
compra [a purchase], and I bring it to her house if I could
eat it over there while she cooks. But my kids, they eat,
they eat, and they eat. And the groceries go quick, you
know... Like, last month, I had to borrow her, her car
insurance money, right? To buy groceries for that month
and then pay it back so she can pay for her car insurance,
you know …
…medication nonadherence, cont…
… Sometimes I’m don’t take my insulin, because I’m
scared I might get a insulin stroke, when it, when [my
blood sugar] gets too low... but that’s between you
and me. I won’t shoot my insulin, you know, when I’m
scared-- if I take it I might go into insulin shock and
maybe die, you know? And my kids don’t see that, you
know? I try to do the best I can. [voicing his kids’
concern] ‘Oh, you didn’t take your insulin today.’ They
fight with me you know? [But they don’t understand
that] there’s a reason I don’t take it sometimes.
Coping responses to food insecurity
 Modifying medication
 Modifying diet
 Social support (family)
 Charity (soup kitchens, food pantry)
Recommendations for Clinicians and
Researchers
 Refer low-income patients to resources such as
food stamps to mitigate food insecurity
 Provide additional supports (e.g., diabetic supplies)
to address increased risk of barriers to health care
access
 Elicit and address patients’ fears and beliefs about
medications to find points of cultural consonance
 Brainstorm culturally-appropriate solutions to
common health literacy challenges (e.g. Rx list
cards for the wallet)
Concluding thoughts
 Community-based minority health research is an effective
way to:
 Build community research capacity
 Produce usable findings
 Strengthen community-campus partnerships
 Cost control measures such as formulary changes and
churning the rolls negatively affect patients’ ability to adhere
to their chronic disease medications
 Widespread fears and concerns about medications may be
exacerbated by cost control measures
Concluding thoughts, cont.
 Food insecurity is associated with limited access to health
care, increased obesity, and more complications from
diabetes
 Economic barriers intersect with and exacerbate other
cultural barriers and health beliefs
 Separating cultural from economic barriers can be difficult:
sometimes cost, not culture, is the most important factor
Acknowledgments
 This research was supported by grant #R01CA128455.
 Co-authors:
 Julie Armin, ABD, School of Anthropology,
Research Assistant
 James Vivian, PhD, University of Connecticut Medical Center,
Data Analyst
 Cristina Huebner Torres, MA, Caring Health Center, Project
Director
 Special thanks to the providers, staff and patients at
Caring Health Center for sharing their expertise.
Background
 Previous research
 Culturally appropriate health care
 Community health advocate program (WtW)