Disparities in the Clinical Encounter: Virginia's African American Children with Special Health Care Needs.

Abstract

This study analyzed Virginia data from the most recent National Survey of Children with Special Health Care Needs. Logistic regression models were run for six Maternal and Child Health Bureau core outcomes and included demographics, child characteristics, health care providers, and health care access variables as predictors. Race/ethnicity disparities were judged to be present if the race/ethnicity variable was a significant predictor in the final model. Examining the components of disparate outcomes, African American children were found to be less likely than their white counterparts to have a usual source for sick and preventive care and to have a personal doctor or nurse. Their parents were less likely to say that doctors spent enough time, listened carefully, were sensitive to values and customs, and made them feel like a partner. These findings emphasize the need to examine health care disparities at a state level in order to guide efforts at remediation.

Full text

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International Scholarly Research Network
ISRN Pediatrics
Volume 2011, Article ID 273938, 8 pages
doi:10.5402/2011/273938
Research Article
DisparitiesintheClinicalEncounter:Virginia’s AfricanAmerican
ChildrenwithSpecialHealth CareNeeds
Donald P.Oswald,1Joann N.Bodurtha,1Janet H.Willis,1DonnaL. Gilles,1
LillianM. Christon,1PaulaL.Ogston,1andSusanM. Tlusty2
1Virginia Commonwealth University, Richmond, VA 23298, USA
2Virginia Department of Health, Richmond, VA 23219, USA
Correspondence should be addressed to Donald P. Oswald, doswald@vcu.edu
Received 26 June 2011; Accepted 1 August 2011
Academic Editors: A. Campanozzi, B. Vasarhelyi, and B. Young
Copyright © 2011 Donald P. Oswald et al. This is an open access article distributed under the Creative Commons Attribution
License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly
cited.
This study analyzed Virginia data from the most recent National Survey of Children with Special Health Care Needs. Logistic
regression models were run for six Maternal and Child Health Bureau core outcomes and included demographics, child
characteristics, health care providers, and health care access variables as predictors. Race/ethnicity disparities were judged to
be present if the race/ethnicity variable was a significant predictor in the final model. Examining the components of disparate
outcomes, African American children were found to be less likely than their white counterparts to have a usual source for sick and
preventive care and tohave apersonaldoctor ornurse.Their parents were less likely tosay thatdoctors spentenough time,listened
carefully, were sensitive to values and customs, and made them feel like a partner. These findings emphasize the need to examine
health care disparities at a state level in order to guide efforts at remediation.
1.Introduction
The Institute of Medicine (IOM) [1] has fruitfully dis-
tinguished between health care difference (in which race/
ethnicitygroupshavedivergentabsolutevaluesofhealthcare
access or outcomes) and disparity (the difference remaining
after other potentially mediating factors have been statis-
tically, or otherwise, accounted for). In the United States,
disparities have been consistently demonstrated in that racial
and ethnic minorities have less access to care, receive poorer
quality of care, and are subsequently less satisfied with their
healthcare than majority racial/ethnic groups [1, 2]. These
disparities are troubling and represent an area of need in
terms of research, public health, and public policy.
In particular, healthcare disparities between African
Americans and whites have been persistent [3]. Disparities
for African Americans have also been noted in other areas
including: higher uninsured rates, lower proportions of a
usual source of care, and higher unmet prescription needs
[4]. Such disparities have been noted for the country as a
whole, but there are specific differences for African Amer-
icans across states as well. For instance, significant health
care disparity patterns between African Americans and
whites have been reported in Alabama, Mississippi, and
Wisconsin, but not in California, Washington, and Colorado
[5]. State-by-state differences illustrate the importance of
examining healthcare disparities for particular populations
on a state level. In Table 1, selected indicators from Kids
Count 2010 [6] show Virginia’s data as compared to U.S.
overall. Virginia’s African American population is over 55%
higher than the national percentage, yet the percentage of
African Americans living in poverty in Virginia is 22% less
than that of the nation. The percentage of Virginia’s children
with special health care needs (CSHCN) and the percentage
of low birth weight and incidence of infant mortality among
African Americans are comparable to the U.S.
Healthcare disparities may result from the interaction of
many factors, and there is no easy path to fully understand
the causal links among these factors, or to define solutions
to the racial disparities that have been observed between

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Table 1: Demographic data and selected child health and poverty
indicators for Virginia and US.
Demographic data
Nonhispanic white alone
Nonhispanic black alone
Nonhispanic American Indian and
Alaskan native alone
Nonhispanic Asian alone
Nonhispanic native Hawaiian and other
Pacific Islander alone
Nonhispanic two or more race groups
Hispanic or Latino
Child Health and Poverty Indicators
Children with special health care needs
(All)
Live in poverty (Black/African-American)
Low Birth weight
(Black/African-American)
Infant mortality per 1,000 births
(Black/African-American)
Confirmed victims of maltreatment
(nonhispanic black)
US
55%
14%
VA
59%
22%
1% 0%
4%5%
0% 0%
3%
22%
3%
11%
19% 21%
36%28%
13.4%12.9%
13.215.4
22% 30%
(2010 Kids Count) [6].
different groups in the United States [2]. van Ryn and Fu [7]
provide a model of the potential mechanisms through which
health and human service providers can have an impact on
racial/ethnic disparities. This model includes factors related
to help-seeker/patient behavior (e.g., self-disclosure and
assertiveness in the medical encounter) and cognitive and
affective factors (e.g., attitude, self-efficacy) [7]. Differences
in help-seeking behavior have been examined in terms of
health care utilization [8]. Potential contributors to dispar-
ities for African Americans include perceptions of quality of
care, perceived patient-provider relationship, perceptions of
health and illness, and perceptions of overall care [9].
Provider beliefs and provider behavior in the clinical
encounter may also impact racial/ethnic disparities. van Ryn
and Fu’s [7] model includes factors such as provider beliefs
about the help seeker, interpretation of the help seeker’s
symptoms, and interpersonal behavior in relation to the help
seeker. Providers may perceive African Americans and low
socioeconomic status patients more negatively on a number
of dimensions (e.g., patient intelligence, beliefs about
patient’s participation in risk behaviors, and expectations
regarding patient adherence to medical advice) [7]. Finally,
the van Ryn and Fu [7] model also incorporates character-
istics of the clinical encounter that might act as obstacles
to seeking services and engaging in treatment, exacerbating
healthcare disparities. Such factors include problems in
communicating with providers, fear of stigma, providers’
lack of empathy or understanding of problems, and lack
of opportunity to give input in treatment decisions [10].
Conceptual models such as the one proposed by van Ryn
and Fu can help to identify potential mechanisms that lead
to healthcare disparities for African Americans and provide
helpful directions for future research. Research and applied
public health work related to understanding and resolving
healthcare disparities has been characterized as a moral
imperative, and the Healthy People 2010 initiative has a
specific focus on resolving racial/ethnic disparities [2].
Current literature documents health care disparities
among children with special health care needs (CSHCN)
in the U.S. African American children are more likely than
white children to have SHCN, as are children from low-
income or single-parent households [11] although this find-
ing has not been entirely consistent [12]. Studies exploring
family satisfaction with care, the presence of medical home
components, and specialty care including dental and mental
health provide examples of disparities and contributing
factors. In their analysis of the 2001 National Survey of
CSHCN, Strickland et al. [13] identified disparities in health
care access and medical home for CSHCN in poverty and
children of racial and ethnic minority. African American and
Latino children were less likely to have a usual source of care
or family-centered care.
Ngui and Flores [14] reported that African American
and Latino parents were significantly more likely than white
parents to be dissatisfied with care and to report problems
with ease of service use. Factors such as minority status, low
family income, lack of health insurance, and children with
higher functional limitations have been linked to decreased
access to and satisfaction with care [12, 14]. Racial/ethnic
disparities also exist in unmet needs for specialty, dental, and
mental health care services. Factors associated with unmet
mental health and dental health care needs for African
American and Latino CSHCN included underinsurance and
living in poverty [15].
Coker et al. [16] reported significantly lower odds of
receiving family-centered care (FCC) for Latino and African
American compared with white children even after adjust-
ment for child health, socioeconomic, and access factors.
Specifically, disparities were reported for Latino and African
American children and children in households with non-
English as a primary language with respect to the FCC com-
ponents of “time spent with the provider” and “sensitivity
to the family’s values and customs”. Indeed, race/ethnicity
disparities in accessing FCC have been reported for all
children, not just CSHCN [17].
While there is strong support for the presence of
race/ethnicity disparities in U.S. health care for CSHCN,
thereisalsogoodreasontobelievethatstatesdifferinimpor-
tant ways with respect to the health care system for children
and families’ experiences in that system [5, 18] and that
effective responses to disparities will likewise differ across
states. The present study was conducted in collaboration
with the Virginia Department of Health; the agency was
particularly interested in the question of race/ethnicity dis-
paritiesinhealthcareforVirginiachildren.Thepresentstudy
examined theMCHBCoreOutcomesandtheircomponents,
for Virginia children with special health care needs, with
particular attention to race/ethnicity disparities. The study
was designed to serve as a model for state-level analyses
that would inform the development of health care policy

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ISRN Pediatrics3
Table 2: MCHB core outcomes for CSHCN.
(1) Families of children and youth with special health
care needs partner in decision making at all levels and
are satisfied with the services they receive;
(2) Children and youth with special health care needs
receive coordinated ongoing comprehensive care within
a medical home;
(3) Families of CSHCN have adequate private and/or
public insurance to pay for the services they need;
(4) Children are screened early and continuously for
special health care needs;
(5) Community-based services for children and youth
with special health care needs are organized so families
can use them easily;
(6) Youth with special health care needs receive the
services necessary to make transitions to all aspects
of adult life, including adult health care, work, and
independence.
that could address race/ethnicity disparities in an intentional
fashion.
2.Methods
The National Survey of Children with Special Health Care
Needs [13] was sponsored by the Maternal and Child
Health Bureau (MCHB) and the National Center for Health
Statistics. The survey was originally conducted in 2001 and
repeatedin2005-2006.Thesurveysamplewasconstructedto
allow for both national- and state-level findings. The project
screened 192,083 households for children with special health
care needs using the Child and Adolescent Health Mea-
surement Initiative CSHCN screener and completed 40,840
CSHCN interviews, including at least 750 interviews in each
state. CSHCN survey data were collected between April 2005
and February 2006.
The data for CSHCN in Virginia were used as the basis
for the present study. Personnel from the Virginia State
Department of Health Title V Program collaborated in this
effort, guiding the topic selection and contributing to the
interpretation of findings. This research was conducted in
accordance with prevailing ethical principles.
3.Outcome Variables
The primary variables of interest were the six core outcomes
for CSHCN identified by the Maternal and Child Health
Bureau (MCHB) as reflecting goals for the system of care
for this population (see Table 2). CSHCN survey data, along
with the algorithm for determining whether the outcomes
were met, are available to the public through the National
Center for Health statistics web site http://www.cdc.gov/
nchs/slaits/cshcn.htm.
Table 3: Predictor variables from conceptual categories.
Included from demographic models:
(i) race/ethnicity
(ii) age
(iii) sex
(iv) metropolitan statistical area (MSA) status (i.e., in
MSA/not in MSA)
(v) household income (% of poverty level)
(vi) highest level of education of anyone in the
household
(vii) whether the child was uninsured (yes/no)∗
(viii) whether primary language spoken in household is
English (yes/no)∗
(ix) family structure
(x) whether the child’s health care has caused financial
problems (yes/no)
Included from child characteristics models:
(i) stability of the child’s health care needs
(ii) whether the child has emotional problems (yes/no)
(iii) whether the child has behavioral problems (yes/no)
(iv) severity of the child’s condition or problem
(v) whether the child receives special education (yes/no)
Included from healthcare provider models:
(i) child has health care source (yes/no)∗
(ii) child has usual routine preventive care source
(yes/no)∗
(iii) child has a personal doctor or nurse (yes/no)∗
(iv) number of doctor visits in the past 12 months
(v) number of ER visits in the past 12 months
Included from healthcare access models:
Child’s health care delayed/foregone in the past 12
months (yes/no)
(ii) Child received all needed preventive dental care
including checkups (yes/no)
(iii) Child received all needed prescription medicines
(yes/no)
∗Omitted for some outcomes because the variable was included in the
definition of the outcome or because of low cell size.
4.AnalysisPlan
The goal of the study was to determine whether there were
race/ethnicity disparities in the extent to which Virginia
CSHCN met the MCHB outcomes. Logistic regression mod-
els were created with “met/did not meet the outcome” as the
dependent variable.
The survey was examined for other variables that might
reasonably be expected to have an impact on whether a
child would meet the outcomes. Selected predictor variables
weredividedintofourconceptualcategories(Demographics,
Child Characteristics, Health Care Providers, and Health
Care Access). Table 3 lists the variables included in each
category.

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4ISRN Pediatrics
Race/ethnicity of the child was included in the Demo-
graphics category and was characterized as White/Non-
Latino (the reference group), African American/Non-
Latino, and Latino. Additional race/ethnicity categories
included in the survey were insufficiently represented in the
Virginia sample to warrant inclusion as a separate group and
were combined in the race/ethnicity category “Other”.
Data analyses were conducted using the svymean,
svyprop, and svylogit procedures in the statistical analysis
package, Stata 8.1. Use of these procedures allows for the
generation of standard errors appropriate to the complex
sample design.
Preliminary models included only race/ethnicity as a
predictor and each outcome as the dependent variable. For
the primary analyses, four logistic regression models were
run for each outcome, one for each category of predictors.
Subsequently, significant predictors from each of the four
models were combined into a final model for each out-
come. Conclusions about significant associations between
predictors and outcomes are based on the final models only.
Race/ethnicity disparities for each outcome were judged to
be present if the race/ethnicity variable was a significant
predictor in the final model.
5.Results
Analyses were limited to the Virginia CSHCN sample (N =
790) which was 58.5% male (SE = .02). The mean age of
the sample was 10.0 years (SE = .19). The race distribution
was 67.5% White (SE = .02), 25.2% African American (SE =
.02), 2.4% Latino (SE = .005), and 4.9% Other (SE = .009).
The estimated proportion of children who met each of the
outcomes, by race/ethnicity, is provided in Table 4.
Preliminary analyses indicated that African American
children, compared to their White counterparts, were signif-
icantly less likely to meet Core Outcome 2 (OR = .37; SE =
.08; P = .000), Core Outcome 3 (OR = .58; SE = 14; P =
.021), Core Outcome 4 (OR = .42; SE = .10; P = .000),
and Core Outcome 6 (OR = .33; SE = .14; P = .012).
Thesefindingsarebestdescribedasrace/ethnicitydifferences;
it is not clear from these results whether race/ethnicity
is the critical variable determining the differences. Other
race/ethnicity groups were not significantly different from
Whites for any outcome.
Primary analyses were then run for each outcome, using
models that included hypothesized predictors, to examine
the data for evidence of disparities. Significant predictors in
the final model for each of the first three core outcomes are
provided in Table 5, along with the associated odds ratio
and confidence interval. In each case, African American
children were significantly less likely to meet the outcome,
compared to White children, taking into account the effects
ofothervariablesassociatedwiththeoutcome;thesefindings
represent disparities in health care for CSHCN. For core
outcomes 4, 5, and 6, race/ethnicity was not a significant
predictor in the final model, and those outcomes were not
explored further.
To clarify the disparities, follow-up analyses were pur-
sued by creating logistic regression models for individual
survey items associated with each of the first three outcomes.
In each model, race/ethnicity was the predictor, and the
individual survey item was the dependent variable. Table 6
summarizes the results.
TheseanalysesrevealedthattheparentsofAfricanAmer-
ican children were less likely to meet Outcome 1 because
they disproportionately fail to “feel like a partner” with
their child’s physician; they were not less likely to be “very
satisfied with services received,” the other component item
of Outcome 1.
Component items contributing to the disparity in Out-
come 2 (“coordinated ongoing comprehensive care within
a medical home”) were more numerous and more varied.
African American children were less likely than their white
counterparts to have a usual source for sick and preventive
careandtohaveapersonaldoctorornurse.Inaddition,their
parents were less likely to say that doctors spent enough
time, listened carefully, were sensitive to values and customs,
and made them feel like a partner; (parents feeling like a
partnerwiththeirchild’shealthcareproviderisacomponent
of both Outcomes 1 and 2). Thus, a variety of health-care-
related differences appear to contribute to the race/ethnicity
disparity in receiving coordinated ongoing comprehensive
care within a medical home.
Under Outcome 3, African American children were less
likelytohavenogapsininsurancecoverage,andtheirparents
were less likely to report that insurance “usually or always
meets the child’s needs.” These two component items appear
to be the primary contributors to the race/ethnicity disparity
in having adequate insurance to pay for needed health care
services.
Further exploratory analyses examined possible relation-
ships among family-centered care survey items. Each of
the family centered care items that showed race/ethnicity
differences was positively associated with “feeling like a part-
ner”; if parents reported that the health care provider more
often spent enough time (chi-square = 107.78; P < 0.001),
listened carefully (chi-square = 239.51; P < 0.001), or was
sensitive to values and customs (chi-square = 180.80; P <
0.001), they were more likely to report feeling like a partner.
Thus, race/ethnicity disparities in family-centered care,
an important component of receiving “coordinated ongoing
comprehensive care within a medical home,” are associated
with differences in feeling like a partner with one’s child’s
health care provider. And “feeling like a partner” appears to
be, at least in part, a function of whether the provider spends
enough time with the child, listens carefully to parents’
concerns, and is sensitive to their values and customs.
6.Discussion
Race/ethnicity disparities in health care for children with
special health care needs are well documented. The CSHCS
Survey provides an opportunity for states to look more
closely at those disparities and to consider their implications
for remediation. In Virginia, African-American families of

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Table 4: Estimated proportion (SE) meeting outcomes by race/ethnicity.
Outcome
Racial/ethnic group
WhiteAfrican American Hispanic/LatinoOther
(1) Families of children and youth with
special health care needs partner in
decision making at all levels and are
satisfied with the services they receive
(2) Children and youth with special
health care needs receive coordinated
ongoing comprehensive care within a
medical home
(3) Families of CSHCN have adequate
private and/or public insurance to pay for
the services they need
(4) Children are screened early and
continuously for special health care needs
(5) Community-based services for
children and youth with special health
care needs are organized so families can
use them easily
(6) Youth with special health care needs
receive the services necessary to make
transitions to all aspects of adult life,
including adult health care, work, and
independence
.62 (.02).53 (.05).64 (.10).52 (.10)
.49 (.02).26 (.04).39 (.10).34 (.09)
.67 (.02).55 (.05).80 (.08).58 (.09)
.70 (.02).49 (.05).59 (.11).72 (.08)
.90 (.01).87 (.04) .82 (.10).92 (.05)
.43 (.03) .20 (.07).42 (.16) .44 (.15)
Table 5: Significant predictors for core outcomes.
Predictor
Outcome (1): families partner in decision making and are satisfied
Being African American
Living in a two-parent stepfamily
Living in some other family configuration1
Child’s care caused financial problems
Child has emotional problems
Child’s care delayed/foregone in last 12 months
Outcome (2): coordinated ongoing comprehensive care within a medical home
Being African American
Being Other race/ethnicity2
Being female
Living in some other family configuration
Child has emotional problems
Child has behavior problems
Increased number of ER visits
Outcome (3): adequate private or public health insurance
Being African American
Child’s care caused financial problems
Child’s care delayed/foregone in last 12 months
1Other family configuration meant: not (a) two parent biological/adopted, (b) two parent stepfamily, or (c) single mother, no father present.
2Other race/ethnicity meant: not (a) White, (b) African American, or (c) Hispanic/Latino.
Odds ratioP 95% confidence interval
.57
2.23
.34
.40
.37
.27
.023
.012
.035
.000
.000
.007
.35–.93
1.19–4.18
.12–.93
.25–.64
.22–.64
.10–.69
.39
.39
.66
.29
.44
.54
.86
.000
.043
.022
.036
.005
.019
.046
.23–.65
.15–.97
.46–.94
.09–.92
.25–.78
.32–.90
.74–.99
.60
.22
.12
.029
.000
.000
.38–.95
.14–.36
.05–.29
CSHCN were less likely than white families to meet MCHB
outcomes 1, 2, and 3.
In the present study, African Americans felt that their
CSHCN were less likely to receive ongoing care within a
medical home. This discrepancy is in part a function of
race/ethnicity differences in health care quality indicators.
African American children are much less likely to have a
usual source of care and a personal doctor or nurse.