Exploring Lack of Trust in Care Providers and the Government as a Barrier to Health Service Use

Article (PDF Available)inAmerican Journal of Public Health 96(4):716-21 · May 2006with145 Reads
DOI: 10.2105/AJPH.2005.063255 · Source: PubMed
Abstract
We examined associations between trust of health care providers and the government and health service use and outcomes. Interviews with a sample of 611 HIV-positive individuals included an attitudinal assessment measuring beliefs concerning the creation of AIDS, information being withheld about the disease, and trust of care providers. Trust in care providers was associated with increased HIV-related out-patient clinic visits, fewer emergency room visits, increased use of antiretroviral medications, and improved reported physical and mental health. Trusting the government was associated with fewer emergency room visits and better mental and physical health. More than one quarter of the respondents believed that the government created AIDS to kill minorities, and more than half believed that a significant amount of information about AIDS is withheld from the public. Ten percent did not trust their provider to give them the best care possible. Distrust may be a barrier to service use and therefore to optimal health. Distrust is not isolated in minority communities but also exists among members of nonminority communities and equally interferes with their use of services and health outcomes.
American Journal of Public Health | April 2006, Vol 96, No. 4716 | Research and Practice | Peer Reviewed | Whetten et al.
RESEARCH AND PRACTICE
Objectives. We examined associations between trust of health care providers
and the government and health service use and outcomes.
Methods. Interviews with a sample of 611 HIV-positive individuals included an
attitudinal assessment measuring beliefs concerning the creation of AIDS, in-
formation being withheld about the disease, and trust of care providers.
Results. Trust in care providers was associated with increased HIV-related out-
patient clinic visits, fewer emergency room visits, increased use of antiretroviral
medications, and improved reported physical and mental health. Trusting the
government was associated with fewer emergency room visits and better men-
tal and physical health. More than one quarter of the respondents believed that
the government created AIDS to kill minorities, and more than half believed that
a significant amount of information about AIDS is withheld from the public. Ten
percent did not trust their provider to give them the best care possible.
Conclusions. Distrust may be a barrier to service use and therefore to optimal
health. Distrust is not isolated in minority communities but also exists among
members of nonminority communities and equally interferes with their use of ser-
vices and health outcomes. (Am J Public Health. 2006;96:716–721. doi:10.2105/
AJPH.2005.063255)
Exploring Lack of Trust in Care Providers and
the Government as a Barrier to Health Service Use
| Kathryn Whetten, PhD, MPH, Jane Leserman, PhD, Rachel Whetten, MPH, Jan Ostermann, PhD, Nathan Thielman, MD, MPH, Marvin Swartz, MD,
and Dalene Stangl, PhD
Numerous studies over the past 3 decades
have examined access to care among—and
the care-seeking behaviors of—individuals
with HIV/AIDS.
1–3
For example, studies
have examined the influence on health ser-
vice use of patient characteristics, provider
characteristics, and factors such as insurance
coverage,
1–3
and appropriate use of health
services has been shown to be related to im-
proved health outcomes.
4
In addition, recent
studies have identified an association be-
tween HIV/AIDS conspiracy beliefs and be-
haviors engaged in to prevent sexually trans-
mitted infections.
5
However, we were unable to find any peer-
reviewed studies of associations between pa-
tients’ level of trust in systems of care and
their care provider and their use of health
services. If education and care efforts are to
be beneficial, they should take into considera-
tion the target community’s beliefs, particu-
larly as they relate to disease origin and
whether providers will provide community
members with appropriate care.
Mistrust of the medical community on the
part of Black Americans extends back to the
era of slavery, when slaves served as subjects in
medical experimentation and research without
consent or personal benefit.
6,7
Blacks believed
that White physicians allowed such subjects to
die so that they could dissect their bodies.
6
Bodies of Black Americans were, in fact, ex-
humed and sold to science.
6
The Tuskegee
Syphilis Study further fostered fear and distrust
of public health officials and later reinforced
the conspiracy theories regarding AIDS.
6–9
Studies have shown that a large proportion
of Black Americans believe that HIV/AIDS
is a man-made weapon of racial warfare and
that the government promotes substance
abuse as a way of keeping Black Americans
poor and in prisons.
7
These beliefs have been
supported through dissemination by provid-
ers, policymakers, and the media of literature
promoting such theories.
6,10
Other research
has found that many people believe that
AIDS is a disease created by God as punish-
ment for breaking religious and moral laws,
that is, a punishment for their sins or the sins
of their parents.
11 , 12
Inequities in access to health care and ade-
quacy of treatment have been well docu-
mented
4
and may support conspiracy theo-
ries. Black Americans are less likely than
White Americans to ask their physician ques-
tions freely.
13
They are more likely to report
believing that their physician will expose
them to unnecessary risk, prescribe them ex-
perimental medications,
13
not provide them
with the best care available,
14
and be moti-
vated by profit.
15
Income
4
and health insur-
ance coverage
13
do not modify the relation-
ship between race and trust. Mistrust in the
medical care system has led, in some cases,
to an inability to recruit members of minority
groups, especially Black Americans, into clini-
cal trials.
7
Black Americans have been found
to be less likely to perceive any real benefits
to such research.
Agrowing body of literature provides evi-
dence that economic disparities are related to
health outcomes and are partially responsible,
through varying mechanisms, for discrimina-
tion previously believed to be racial or ethnic
in nature.
4,16
There is a lack of literature re-
lated to trust of providers and the government
on the part of poor European Americans.
We examined trust in health care providers
and the government and its association with
health service use and health outcomes
among an HIV-positive cohort recruited from
5 states in the “Deep South” (usually consid-
ered to include Alabama, Georgia, Louisiana,
Mississippi, North Carolina, South Carolina,
and all or part of Florida, Virginia, Tennessee,
Arkansas, and Texas). We also explored racial
differences in levels of trust. If trust influences
use of health services, then providers and
policymakers attempting to reduce barriers to
care, particularly among the poor and disen-
franchised, should address this issue.
METHODS
The Coping with HIV/AIDS in the South-
east Study interviewed 611 consecutively sam-
pled HIV-infected individuals who received
April 2006, Vol 96, No. 4 | American Journal of Public Health Whetten et al. | Peer Reviewed | Research and Practice | 717
RESEARCH AND PRACTICE
care at one of 8 infectious disease clinics in
5 states of the Deep South: North Carolina,
South Carolina, Georgia, Alabama, and
Louisiana. This region was selected as a re-
sult of its demographic and economic similari-
ties. Incident AIDS cases increased 29% from
2000 to 2002 in these 5 states, as compared
with increases of 9% across the other south-
ern states and less than 1% (0.32%) in the re-
mainder of the country.
17 , 18
This study was funded by the National Insti-
tute of Mental Health to examine the charac-
teristics, coping strategies, life histories, and
patterns of health care use of individuals re-
ceiving HIV-related care outside the 3 major
cities within the 5 study states. At the time of
recruitment in 2001, the clinics chosen for
study inclusion treated 11.9% of the 5 states’
HIV/AIDS patients, and 10.0% of the clinic
patients at that time participated in the inter-
views, which were conducted by Battelle’s Cen-
ter for Public Health Research and Evaluation
in Durham, NC. All sites were carefully moni-
tored to ensure that interviewers were imple-
menting the consecutive sampling strategy.
The demographic characteristics of the
study participants were representative of
those of the overall populations seen at each
of the clinics. Approximately one third of the
patients seen at these clinics are female (31%
in our study population), and more than 70%
are African American (69% in our study pop-
ulation). Also, these percentages reflected the
population breakdown of HIV-positive indi-
viduals in each of the study states at the time
of recruitment (at least 70% African Ameri-
can and approximately 30% female).
Measures
Participants responded to 3 items related
to trust in their providers. First, they indicated
the extent to which they agreed with the
statement “Your doctors want to give you the
best care possible.” Second, they were asked
“How much do you trust your HIV doctor or
clinic to offer you the best medical care they
can provide?” and “How much do you trust
your HIV doctor or clinic to put your health
above everything else?” Each response could
range from 1 (no trust) to 5 (complete trust).
Respondents were also asked to rate their
agreement, on a 5-point Likert scale, with the
following 3 statements: “The government is
using AIDS as a way of killing off minority
groups,” “A lot of information about AIDS is
being held back from the general public,” and
“AIDS is the punishment of God” (on each
statement, the response range was 1 to 5).
Principal components factor analyses con-
ducted on these variables identified 2 under-
lying factors. The similar factor loadings for
the respective component variables sug-
gested that responses could be given equal
weights in the creation of summary scales.
Respondents’ belief that God created AIDS
as punishment had the greatest uniqueness
and was used as a separate variable. The
questions relating to trust of physicians were
combined into a summative scale ranging
from 3 to 15 (15 representing the greatest
amount of trust), while the 2 remaining
items representing trust in the government
were combined into a scale ranging from 2
to 10 (10 being the highest). The internal re-
liabilities of the 2 scales were 0.78 and
0.56, respectively.
Respondents were asked how many times
they had gone to an outpatient clinic for HIV-
related care over the past 9 months. Approxi-
mately one visit every 3 months (3 visits over
the 9-month period) was considered optimal
care.
19
The distribution of clinic visits was
skewed, with the majority of respondent visit-
ing a clinic for HIV-related care 3 or fewer
times and a large tail to the right with some
respondents going to the clinic for HIV care
one or more times per week. Because our
variables of interest were related to trust, we
decided that visiting a clinic at least the opti-
mal number of times was an indication of
willingness to receive appropriate care. There-
fore, a binary variable was created in which 1
represented 3 or more clinic visits and 0 rep-
resented fewer than 3 visits.
Similarly, respondents were asked whether
they had been to the emergency room in the
past 9 months and, if so, how many times.
We did not differentiate between emergency
room visits that were related to HIV and
those that were not. Emergency room visits
are commonly used as an aggregate measure
of inappropriate health care use, even among
individuals who are HIV positive; however,
some visits are unavoidable even at appropri-
ate levels of care seeking.
20
Respondents
were asked whether or not they were taking
antiretroviral medications and to identify their
medication on a picture pill chart.
We measured health status using the Med-
ical Outcomes Survey Short Form 36 (SF-36),
CD4 counts, and viral load counts. The SF-36
has been used in more than 4000 research
studies and has been shown to be predictive
of clinical health outcomes.
21
The SF-36
measures health outcomes along 8 dimen-
sions: (1) physical functioning, (2) limitations
in physical abilities, (3) pain, (4) general per-
ceptions of one’s health, (5) vitality, (6) social
functioning, (7) limitations in activities due to
emotional health issues, and (8) mental health.
The physical component summary scale com-
bines dimensions 1 through 4, and the mental
component summary combines dimensions 5
through 8.
22–24
The physical and mental
health summary scales are the most highly
predictive subscales of the SF-36 and can be
used in isolation,
25
as we did in this study.
Items were translated into the recommended
rating scale of 0 through 100.
24
Viral load and
CD4 counts were taken from chart abstraction
data. The counts used in this analysis were
those that were taken closest to the interview
date, and viral loads were logged (base 10).
Whether respondents lived in poverty was
calculated from their reported total income
from all sources as compared with the federal
poverty level. Federal poverty level determi-
nations take into consideration the number
of dependents living in a household; there-
fore, we used number of dependents in the
household in our calculations. Because the
vast majority of non-White respondents were
African American, we created a single vari-
able labeled “minority.”
Statistical Analysis
We conducted t tests to examine differ-
ences in variable means between minority
and nonminority respondents and between
male and female respondents. To further ex-
amine interactions between trust and minority
status, we created 2× 2 tables (Minority/
Nonminority×Full Trust/Any Distrust) for
each outcome variable. We then used t tests to
examine differences between these variables.
We used logistic regression in analyses of
HIV-related outpatient visits and in analyses
of whether respondents reported being on
or off antiretroviral medications. We used a
American Journal of Public Health | April 2006, Vol 96, No. 4718 | Research and Practice | Peer Reviewed | Whetten et al.
RESEARCH AND PRACTICE
FIGURE 1—Findings reflecting mistrust of the government.
negative binomial model to examine emer-
gency room visits, the reason being that such
models explicitly deal with count data and
can account for large proportions of zeros in
use measures and skewed distributions of
positive values. In addition, unlike the more
commonly used Poisson model, the negative
binomial model allows for overdispersion, or
variance greater than the mean. In the case of
emergency room visits, the mean was 0.87,
with a variance of 4. We used ordinary least
squares regression in analyses of health status
because each of the outcome variables was
continuous and normally distributed.
We used F tests to determine whether site
variables were jointly statistically significant
in any of the regression models. Statistical
significance would have indicated significant
variation in the outcome variables according
to study site, and this variation, if correlated
with trust, would have biased our estimates
if omitted. We found that site differences
were significant in several of the models, and
thus we included site-fixed effects in each of
the regressions.
To analyze the sensitivity of the findings to
the model specification, we ran alternative
specifications for each regression model. The
regression models focusing on health care use
(e.g., clinic and emergency room visits) were
run with and without physical health and
mental health as independent variables, and
viral load was examined in both the presence
and absence of antiretroviral use. We present
the regression results without the antiretrovi-
ral use variable because this variable was as-
sociated with trust. All of the models were
also run with and without interaction terms
for minority and the variables for trust in pro-
viders and trust in government.
RESULTS
Descriptive Statistics
Nearly one quarter of all minority respon-
dents (23%) and 11% of nonminority respon-
dents strongly or somewhat believed that the
government created AIDS to kill minorities
(Figure 1). These percentages increased to
47% and 23%, respectively, when uncer-
tainty as to whether the government created
the disease was included.
More than half of the minority respondents
and one third of the nonminority respondents
strongly or somewhat believed that a signifi-
cant amount of information about AIDS was
being held back from the public. When un-
certainty as to whether information was being
withheld was included, the percentages in-
creased to nearly three quarters of minority
respondents and more than half of nonminor-
ity respondents. Overall, half of the respon-
dents believed that information regarding
HIV was being withheld from them.
Differences in trust according to minority
status were statistically significant (P <.001).
Ten percent of respondents did not trust their
doctor or clinic to provide them with the best
care possible, and 1 in 7 did not believe that
their provider placed their health care above
all other considerations.
Respondents’ mean rating of trust in their
doctors was 13.5 on the earlier-mentioned 3
to 15 scale, and their mean rating of trust in
the government was 6.5 on the 2 to 10 scale
described earlier (Table 1). Their mean rating
in terms of believing that AIDS is not a pun-
ishment from God was 4.5 on a scale ranging
from 1 to 5, with 5 representing strong agree-
ment. An examination of levels of trust ac-
cording to minority racial status revealed
significant differences (Table 1). Minority re-
spondents were more likely to believe that
the government created AIDS and that infor-
mation about it is being withheld (both Ps<
.001). Minority respondents also were more
likely to believe that AIDS is a punishment
from God (P<.001).
The average age of the study population
was 40 years. The proportions of the respon-
dents who were male and members of minor-
ity groups were reflective of the HIV-positive
populations residing in the study states. More
than two thirds of the respondents were living
in poverty. Nonminority respondents were
more likely to be male and had higher CD4
counts (P<.001). No other race-specific dif-
ferences were observed.
Student t tests indicated that minority re-
spondents who distrusted their provider were
less likely to visit their provider 3 or more
times (P< .05), but this relationship did not
hold for nonminority respondents. However,
examination of differences between trust
means related to reported physical health
and mental health scores showed that both
minority and nonminority respondents scored
significantly lower if they distrusted their
provider. Trends were similar, but not signifi-
cant, for trust in government.
Regression Analyses
Trust in one’s care providers was signifi-
cantly associated with 5 of the 6 outcome vari-
ables (Tables 2 and 3): 3 or more HIV-related
clinic visits (P<.05), fewer emergency room
visits (P<.05), greater likelihood of taking
April 2006, Vol 96, No. 4 | American Journal of Public Health Whetten et al. | Peer Reviewed | Research and Practice | 719
RESEARCH AND PRACTICE
TABLE 1—Means and Percentages for Dependent and Independent Variables
Total Minority Nonminority
Sample Respondents Respondents
(n = 611) (n = 422) (n = 189)
Trust doctor,
a
mean rating (SD) 13.5 (2.4) 13.46 (2.06) 13.69 (1.92)
Trust government,
b
mean rating (SD) 6.5 (1.1) 6.10 (2.32) 7.45 (2.24)*
AIDS is a punishment from God,
c
mean rating (SD) 4.5 (2.0) 4.36 (1.14) 4.67 (0.91)*
Age, mean (SD) 40.2 (8.7) 40.3 (8.5) 40.2 (8.7)
Younger than 40 y, % . . . . . . . . .
Male, % 68.7 62.7 82.0*
Minority, % 69.0 . . . . . .
High school graduate, % 79.7 75.6 88.9
Living in poverty, % 70.5 70.1 71.4
SF-36 physical composite score, mean (SD) 67.5 (23.7) 67.5 (23.5) 67.6 (24.1)
SF-36 mental health composite score, mean (SD) 59.1 (21.5) 60.3 (21.2) 56.7 (22.0)
Taking antiretrovirals, % 77.6 75.8 81.5
Note. SF-36 = Medical Outcomes Survey Short Form 36.
a
On a scale of 3–15, with 15 being highest.
b
On a scale of 2–10, with 10 being highest.
c
On a scale of 1–5, with 1 being punishment.
*P < .001.
TABLE 2—Relationships Between Trust and Service Use
3 or More Clinic Emergency Use of Antiretrovirals
c
:
Visits
a
: Odds Ratio Room Visits
b
: Odds Ratio
(95% Confidence Interval) Coefficient (SE) (95% Confidence Interval)
Trust care providers 1.13* (1.02, 1.25) –0.0768* (0.0365) 1.15** (1.04, 1.28)
Trust government 1.06 (0.97, 1.17) –0.0689* (0.0340) 1.06 (0.96, 1.16)
God did not create AIDS 1.06 (0.87, 1.29) 0.0392 (0.0672) 0.97 (0.80, 1.19)
Minority 1.00 (0.59, 1.68) 0.124 (0.179) 1.10 (0.66, 1.85)
Male 1.03 (0.65, 1.64) –0.595*** (0.159) 1.57* (1.00, 2.47)
Younger than 40 y 0.90 (0.58, 1.40) –0.009 (0.154) 0.74 (0.48, 1.14)
Living in poverty 1.15 (0.71, 1.86) –0.111 (0.169) 1.56 (0.97, 2.51)
High school graduate 1.32 (0.79, 2.23) 0.119 (0.190) 1.29 (0.77, 2.14)
Note. Clinic differences were controlled via fixed effects.
a
n=575.
b
n=594.
c
n=595.
*P < .05; **P < .01; ***P < .001.
antiretrovirals (P<.01), better mental health
(P<.001), and better physical health (P<.01).
Trusting the government was associated with 3
of the 6 outcome variables: fewer emergency
room visits (P<.05), better mental health (P<
.001), and better physical health (P<.001).
The statistical significance levels of the associa-
tions between trust in care providers and num-
ber of outpatient care visits, number of emer-
gency room visits, and use of antiretrovirals
did not change when we controlled for physi-
cal health status (data not shown).
Believing that God did not create AIDS as
punishment for sins was not related to any of
the outcome variables. Minority status was as-
sociated with a higher viral load (P<.05),
whereas being a high school graduate was as-
sociated with a lower viral load (P< .05). Mi-
nority status was associated with better mental
health (P<.01). Male gender was associated
with more emergency room visits (P<.001);
being younger than 40 years was associated
with better physical health (P<.001). The
trust variables were not significantly related to
either the CD4 (data not shown) or viral load
regression models (Table 3).
When interaction effects for provider trust
and minority status and for government trust
and minority status were included in the
models, they were not significant either indi-
vidually or together. Poisson regression pro-
vided the same statistical significance for the
independent variables as the negative bino-
mial. The significance level for trust in provid-
ers was higher (P<.001) when number of
clinic visits was run as a negative binomial
with the outcome variable being squared de-
viation from 3 visits. Antiretroviral use was
significantly associated with viral load
(P<.001) and did not change the results for
any other variable.
DISCUSSION
Trust was associated with more appropriate
numbers of clinic visits, use of antiretroviral
medications, fewer emergency room visits,
and better health outcomes. Although a num-
ber of studies have found associations be-
tween distrust and attitudinal barriers to care,
this study illustrates that trust is significantly
associated with use of services and medica-
tion as well as health outcomes. Our estimates
of prevalence of distrust in an HIV-positive
population were similar to those reported in
a recent telephone survey of 500 randomly
selected African Americans aged 15 to 44
years; in that study, 16% of respondents
agreed that AIDS was created by the govern-
ment to control the Black population, and
59% believed that a significant amount of
information about AIDS was being held back
from the public.
5
The finding that members of nonminority
groups are distrustful of providers and the
government is new to the trust and health lit-
erature. Distrust was associated with poor re-
ported health among both minorities and non-
minorities. When we controlled for poverty,
education, age, and gender, the interaction
terms for minority and distrust were not sig-
nificant, indicating that, regardless of race,
individuals with similar sociodemographic
American Journal of Public Health | April 2006, Vol 96, No. 4720 | Research and Practice | Peer Reviewed | Whetten et al.
RESEARCH AND PRACTICE
TABLE 3—Relationships Between Trust and Health
Coefficient (SE)
Mental Health Score
a
Physical Health Score
a
Viral Load (Log 10)
b
Trust care providers 1.573*** (0.454) 1.433** (0.498) –0.0170 (0.0389)
Trust government 1.448*** (0.385) 1.778*** (0.422) 0.0067 (0.0295)
God did not create AIDS 0.608 (0.805) 0.154 (0.882) –0.0064 (0.0640)
Minority 5.996** (2.055) 3.039 (2.250) 0.382* (0.160)
Male 3.263 (1.898) 3.139 (2.078) –0.085 (0.145)
Younger than 40 y 2.455 (1.751) 10.049*** (1.918) 0.051 (0.134)
Living in poverty 2.966 (1.936) 0.297 (2.120) –0.232 (0.149)
High school graduate 5.436 (2.219) 5.114 (2.430) –0.358* (0.167)
Note. Clinic differences were controlled via fixed effects.
a
n=595.
b
n=379.
*P < .05; **P < .01; ***P < .001.
characteristics who do not trust their providers
or the government are less likely to visit clin-
ics, more likely to use the emergency room,
less likely to use antiretrovirals, and more
likely to report poor physical and mental
health.
These findings suggest the need for further
causal research, including studies ascertain-
ing level of trust before treatment initiation
and following patients longitudinally to deter-
mine whether trust precedes patterns of use.
Our cross-sectional data cannot illuminate,
for example, whether lower levels of trust re-
sult in people being less likely to seek mental
health services or accept antiretroviral med-
ications or whether, in contrast, receipt of
less care leads to a lack of trust. Further-
more, people who are sicker may feel and
express greater distrust.
Another limitation of our study is that con-
secutive sampling biased the sample recruited
toward those who frequented care facilities
more often. Also, bias could have been intro-
duced by seasonal variation in the types of
patients receiving care. If one were to hypoth-
esize the direction of the resulting bias, it
would be toward greater trust in the system
of care being used, and thus our results
would be conservative.
HIV is spreading at a relatively rapid pace
in the Deep South, and this study indicates
that more than half of those undergoing care
believe that information about AIDS is being
held back from the public, and one quarter
believe that the government created AIDS
as a way to kill minorities. One in 10 of our
respondents reported not trusting their doctor
or clinic to provide them the best care possi-
ble, and 1 in 7 reported not believing that
their provider placed their health care above
all other considerations. Furthermore, minor-
ity respondents exhibited greater distrust, but
nonminority respondents were also distrust-
ful. Our results indicate that distrust is a
major issue in these 5 states of the Deep
South, one that may need to be addressed in
both prevention and care services.
About the Authors
Kathryn Whetten and Rachel Whetten are with the Center
for Health Policy and the Health Inequalities Program, Duke
University, Durham, NC. Jan Ostermann is with the Depart-
ment of Community and Family Medicine and the Health
Inequalities Program, Duke University. Nathan Thielman is
with the Division of Infectious Diseases and International
Health and the Health Inequalities Program, Duke Univer-
sity. Marvin Swartz is with the Department of Psychiatry
and Behavioral Sciences, Duke University. Dalene Stangl is
with the Institute of Statistics and Decision Sciences, Duke
University. Jane Leserman is with the Department of Psychi-
atry, University of North Carolina, Chapel Hill.
Requests for reprints should be sent to Kathryn Whetten,
Center for Health Policy, Box 90253, 125 Old Chemistry
Bldg, Durham, NC 27708 (e-mail: k.whetten@duke.edu).
This article was accepted June 9, 2005.
Contributors
K. Whetten was responsible for inclusion of the trust-
related survey questions and the conceptualization of
the analysis and was the primary author of the article.
R. Whetten was responsible for conceptualization and
editing of the article. J. Ostermann was responsible for
conceptualization and statistical analyses. N. Thielman,
M. Swartz, D. Stangl, and J. Leserman contributed to
conceptualization and editing of the article.
Acknowledgments
This study was supported in part by the National Insti-
tute of Mental Health (NIMH), the National Institute of
Drug Abuse (NIDA) and the National Institute of Nurs-
ing Research (NINR) (grant 5R01MH061687–05).
We thank the principal investigators, project coordi-
nators, and interviewers at each of the study sites for
their incredible work in ensuring a truly consecutive
sampling procedure, their participation in training, certi-
fication, and ongoing monitoring and their work with
their institutional review boards. This study would not
be possible without them. We would also like to thank
Dawn Dampier and Charles Knott of Battelle Research
Inc. for their professionalism and excellent work.
Human Participant Protection
This study was approved by the institutional review
boards of Duke University and each of the separate
study sites. All of the participants provided informed
consent.
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PHIn12J1
    • "The objective of this study was to determine if sociodemographic and socioeconomic characteristics predict levels of trust in one's health care provider, trust in the health care system in general, and trust in one's community among PLWHA in Mississippi. At first glance, overall trust may seem fairly high in our sample; however, it was noted that trust in providers to provide the best possible care was found to be much higher (90%) in another sample of HIV-infected individuals in five states of the Deep South, excluding Mississippi (Whetten et al., 2006 ), compared to 78.9% in our sample of Mississippians. In our analyses, we found that African Americans showed less trust in health care providers to give them the best possible quality of health care. "
    [Show abstract] [Hide abstract] ABSTRACT: Trust in one's health care provider, trust in the health care system in general, and even trust in one's community affects engagement in HIV-related health care. This article examines the issue of trust among a random sample of HIV-infected individuals residing in Mississippi, an area hard-hit by the HIV/AIDS epidemic. Five constructs based on survey responses from these individuals were developed: (1) trust in one's provider to offer the best possible medical care, (2) trust in one's provider to protect patient privacy, (3) willingness to disclose HIV status to one's provider, (4) trust in the health care system, and (5) trust in one's community. Findings suggest that interventions to improve trust in providers to deliver the highest quality of care should be targeted to young people, African Americans, and the more highly educated. Interventions to increase trust in providers to protect privacy should focus on creating and strengthening social support groups or networks that build relationships and foster trust. Interventions aimed to increase community trust also should be targeted to young people. This information is useful to researchers, policy makers, health care providers, and organizations interested in prioritizing interventions and strategies that have the greatest potential to reduce health disparities in HIV diagnosis and treatment in the Deep South.
    Full-text · Article · Apr 2016
    • "Cunningham, Sohler, Korin, Gao, and Anastos (2007) identified two levels of trust as it related to HIV: the interpersonal relationships that patients had with their primary care providers and trust in the larger system of health care and the government. Whetten et al. (2006) found that, for PLWH, having trust in one's primary care providers was associated with better mental and physical health as well as with more appropriate use of health care services, including attending clinic visits, adhering to medications, and having fewer visits to the emergency room. "
    [Show abstract] [Hide abstract] ABSTRACT: Health literacy is important to access to and quality of HIV care. While most models of health literacy acknowledge the importance of the patient-provider relationship to disease management, a more nuanced understanding of this relationship is needed. Thematic analysis from 28 focus groups with HIV-experienced patients (n =135) and providers (n = 71) identified a long-term and trusting relationship as an essential part of HIV treatment over the continuum of HIV care. We found that trust and relationship building over time were important for patients with HIV as well as for their providers. An expanded definition of health literacy that includes gaining a patient's trust and engaging in a process of health education and information sharing over time could improve HIV care. Expanding clinical perspectives to include trust and the importance of the patient-provider relationship to a shared understanding of health literacy may improve patient experiences and engagement in care.
    Full-text · Article · Mar 2016
    • "Just as in politics, the lack of familiarity with a key institutional representative—in this case, a specifi c health care professional—hinders the translation of interpersonal to institutional trust. Many studies document that utilization—i .e., experience with specifi c healthcare professionals—is positively associated with trust (O'Malley, Sheppard, Schwartz, & Mandelblatt, 2004 ; Whetten et al., 2006 ). In the case of racial and ethnic minorities, however, the issue is complex because racial and ethnic minorities may cite lower trust precisely because of their experience, and even with a lack of recent or regular experience with a physician . "
    [Show abstract] [Hide abstract] ABSTRACT: While many agree that interpersonal and institutional trust are key ingredients for social order, the differences between the two and how they influence one another remain unclear. We define trust as the willingness to be vulnerable to another party, and focus our discussion on situations where the trustor (trusting party) is an individual member of the public and the trustee (party being trusted) is an institution or one of its members. We review the literature on trust and related concepts that address the potential relationships between interpersonal trust and institutional trust, focusing on two illustrative contexts: the political arena and health care. For each context, we examine extant research to provide definitions of institutions and note how these definitions have implications for defining institutional trust in each context. Second, we examine how characteristics of the trustor (individual-level characteristics) may affect the relationship between interpersonal and institutional trust. For example, a trustor’s gender, race and ethnicity, and familiarity with the institutional trustee may frame his/her interactions with, and subsequently their trust in, the institution. Being cognizant of these factors will improve understanding of the cases where a relationship between interpersonal and institutional trust exists. We conclude by highlighting how these arguments can inform future research.
    Full-text · Chapter · Jan 2016 · Journal of the Association of Nurses in AIDS Care
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