Differences in Perceived Need for Medical, Therapeutic, and Family Support

Services Among Caregivers of Children with Autism Spectrum Disorder

Teal W. Benevides, PhD, MS,

1

1
OTR/L ;

Henry J. Carretta, PhD,

2
MPH ;

David S. Mandell,

3
ScD

Thomas Jefferson University, 2 Florida State University, 3 University of Pennsylvania

PURPOSE

RESULTS

Caregivers of children with autism spectrum disorder (ASD) who are from racial or ethnic minority
groups experience greater difficulty than non-minority caregivers obtaining care1-5

Weighted Bivariate Comparisons of Perceived Need for Services by Race/

Ethnicity Category

Differences in service access may not be due solely to healthcare system or provider factors (e.g.,
availability of providers, sensitivity of providers) but also to parents help-seeking behaviors6-8

100

Identifying racial and ethnic differences in perceived need for treatment among caregivers of
children with ASD will improve understanding of disparities in care seeking

METHODS
Data Source:
2005-2006 and the 2009-2010 National Survey of Children with Special Health Care Needs
(NS-CSHCN) datasets, collected by the CDC, National Center for Health Statistics9,10
Survey responses on the Screening, Household, and Main Interview datasets were combined
Sample:
The Main Interview dataset was used to identify children with ASD ages 0-17 years
2005-2006 survey: n= 2123; 2009-2010 survey: n=3055
ASD diagnosis was identified as a Yes response to : To the best of your knowledge, does [child]
currently have autism or autism spectrum disorder, that is, an ASD? (2005-06) or Does
[child] currently have autism, Aspergers disorder, pervasive developmental disorder (PDD),
or other autism spectrum disorder? (2009-10)
Variables:
Race and Ethnicity. Five categories were created: 1) white, non-Hispanic; 2) any race,
English-speaking Hispanic; 3) any race, Spanish-speaking Hispanic; 4) black, non-Hispanic;
and 5) other race, non-Hispanic.
Perceived Service Need. Six services were examined: 1) specialty physician care; 2)
prescription medication; 3) therapy services (OT, PT, ST); 4) child mental health (MH) care; 5)
family mental health care; 6) respite care
Yes response to In the past 12 months, was there any time when your child needed _
[service]_?
Statistical Analysis:
Bivariate methods used to examine row and column independence using Rao-Scott designbased F statistics11,12 to correct for the complex sampling design
Multivariate logistic regressions used to examine the relationship between race/ethnicity and
perceived service need after controlling for child and family characteristics

White, Non-Hispanic

90

Hispanic, Englishspeaking
Hispanic, Spanishspeaking
Black, Non-Hispanic

80
Unadjusted Percent

The purpose of this study was to identify differences in caregiver-reported perceived need for
treatment services among children with ASD from five racial and ethnic groups in two crosssectional population-based datasets

RESULTS

70
60

*Overall p.05

50
40
30
20
10

Adjusted OR and 95% CI of Multivariate Logistic Regression Models

Associated with Perceived Need for Services Among Children with ASD
Specialty
Physician
White,
non-Hispanic
Ref
(n=3 717)
Hispanic,
English
0.81
speaking [0.57,1.15]
(n=408)
Hispanic,
Spanish
1.54
speaking [0.85,2.80]
(n=130)
Black,
0.82
non-Hispanic
[0.58,1.16]
(n=418)
Other race,
0.82
non-Hispanic
CONCLUSIONS[0.50,1.34]
(n=442)

Prescrip.
Med
Ref

Therapy

Child MH
care

Family
MH care

Respite
care

Ref

Ref

Ref

Ref

0.44*
1.63*
[0.30,0.64] [1.02,2.62]

1.15
[0.79,1.68]

1.24
0.88
[0.84,1.83] [0.56,1.38]

0.53*
1.76
[0.29,1.00] [0.85,3.67]

0.98
[0.54,1.78]

0.88
[0.45,1.75]

0.55*
1.68*
[0.39,0.79] [1.09,2.59]

0.57*
[0.40,0.81]

0.67*
1.14
[0.45,0.99] [0.75,1.74]

0.57*
1.02
[0.37,0.86] [0.65,1.58]

0.75
[0.47,1.22]

0.87
1.24
[0.58,1.29] [0.70,2.19]

0.49
[0.23,1.03]

0
Specialty*

Prescription
Med*

Therapy*

Child MH*

Family MH

Respite*

CONCLUSIONS
Perceived need for certain services is different across various race/ethnic
groups, even after adjusting for child and family characteristics.
Practitioners should recognize that caregiver perceptions of need may in turn
affect how they prioritize and seek care, independent of their childs specific
needs.
Future research should explore the socio-cultural expectations related to race
and ethnicity which guide caregiver selection of treatments in order to inform
appropriate care models.

*The OR differs from 1.00 (p.05); All regressions adjusted for the following covariates: survey year, sample type (cell-phone,
landline), child gender, child age, household federal poverty level, annual household out-of-pocket expenses, household urbanicity,
childs insurance status, highest level of education in the childs household, and child functional status

FUNDING SOURCE ACKNOWLEDGEMENT & ETHICS APPROVAL

This study was supported by grant R40MC26194-01-02 from the Maternal and Child
Health Research Program, Maternal and Child Health Bureau (Title V, Social Security Act),
Health Resources and Services Administration, Department of Health and Human
Services, and a Deans Research Award from the Jefferson School of Health Professions,
Thomas Jefferson University, Philadelphia, PA
The study was deemed exempt by the first authors institutional review board.
For References or Questions, please contact Teal Benevides at
Teal.Benevides@Jefferson.edu