Enrollment in Early Intervention Associated with Increased Parental Stress in a Large Cohort

of Parents of Young Children at Risk for Autism Spectrum Disorder

Sarabeth Broder-Fingert MD, MPH1; Andrea Chu BA2; Nicole Melita MA1; Morgan Walls, MD1; Greg Patts MPH2; Jenna Sandler MPH2; Amanda Bennett MD3;
Marilyn Augustyn MD1; Carol Weitzman MD4; Marisol Credle MA4; Manju Abraham MS3; Emily Feinberg ScD, CPNP1,2

1Department of Pediatrics, Boston University School of Medicine; 2Department of Community Health Sciences, Boston University School of Public Health; 3Developmental & Behavioral Pediatrics, Childrens Hospital of Philadelphia;
4Developmental & Behavioral Pediatrics, Yale School of Medicine

Introduction Results
BACKGROUND: Table 1. Characteristics of the Study Populations Table 2. Parenting Stress, Social Support, and Family Impact Scores
Parents of children with autism spectrum disorder (ASD)
consistently report higher levels of stress compared to parents Full Sample Enrolled in Not Enrolled
Parent Parent-Reported Measures
(n=200) EI (n=91) in EI (n=109) Mean (sd)
of children without ASD
Mean age in years (sd) 31.4 (7.5) 31.5 (7.2) 31.1 (7.7) PSI-SF: Parental Distress 30.8 (11.1)
Few studies address parental stress in parents of children with
ASD in vulnerable populations (e.g. racial/ethnic minorities, Parent ethnicity (%) PSI-SF: Parent-Child Dysfunctional Interaction 28.2 (8.4)
Hispanic/Latino 31.2 31.9 30.6
lower socioeconomic status) Parent race (%) PSI-SF: Difficult child 32.2 (9.9)
HYPOTHESES: Asian 7.0 8.8 5.6 PSI-SF: Total score 91.2 (26.1)
Black 53.3 51.6 54.6
Parents of children at high-risk for ASD in this population would White 13.6 12.1 14.8 PSI Clinically Significant 35.6%
report high levels of family distress. Other 26.1 27.5 25.0 FIQ: Negative Impact Social Relationships 6.9 (7.5)
Parents of children enrolled in Birth to Three Early Intervention Less than college graduate (%) 77.3 76.9 77.6 FIQ: Negative Feelings toward parenting 9.2 (5.3)
(EI) would report lower levels of stress than those not in EI Married (%) 53.8 55.6 52.3
FIQ: Positive Feelings toward parenting 18.5 (4.7)
Public Insurance (%) 81.0 84.6 78
Receiving food stamps (%) 65.5 65.9 65.1 FIQ: Financial Impact 3.2 (4.5)
Methods Works outside the home (%)* 50.5 42.9 56.9 FIQ: Impact on Marriage 3.6 (3.7)
Child FIQ: Impact on Siblings 6.5 (3.6)
PARTICIPANTS:
Mean age in months (sd) 22.0 (3.4) 22.4 (3.4) 21.7 (3.4) MOS-SSS: Emotional/ Informational Support 3.7 (1.0)
Eligibility criteria
Male (%) 70.5 65.9 74.3 MOS-SSS: Tangible Support 3.3 (1.2)
Parents of children ages 15-27 months with autism risk based on
Modified Checklist for Autism in Toddlers Revised with Follow- Mean MCHAT-R score* (sd) 8.5 (3.3) 9.2 (3.3) 7.9 (3.2) MOS-SSS: Affectionate Support 4.2 (1.0)
Up or clinical concern Mean time in EI in months (sd) - 8.42 (7.5) -- MOS-SSS: Positive Social Interaction 3.8 (1.2)

Adaptive Behavior Assessment (ABAS) (mean, sd) MOS-SSS: Overall score 44.8 (12.1)
Context Communication Scaled Score 4.6 (2.6) 4.3 (2.4) 4.9 (2.7)
Baseline data from a large trial to address disparities in services Social Scaled Score 5.4 (2.6) 5.1 (2.9) 5.6 (2.4)
Self-Direction Scaled Score 5.5 (3.1) 5.2 (3.1) 5.8 (3.1)
for young children at risk for autism
Families recruited from urban primary care clinics in Boston, ASD diagnosis (%) 59.1 57.6 60.6
Philadelphia, and New Haven * p<0.05 for parents of children enrolled in EI vs not enrolled in EI.

PREDICTOR OF INTEREST: Table 3. Adjusted mean difference in parent-reported measures by EI participation

Enrollment in Early Intervention Enrolled in EI Not enrolled in EI Adjusted mean 95% CI P-value
Parent response to the question, Is your child currently receiving (mean, sd) (mean, sd) difference*
Early Intervention services? Overall Social Support (MOS-SSS) 3.5 (1.0) 3.9 (0.9) -0.32 -0.58,-0.05 0.01*
Emotional/informational Support 3.5 (1.0) 3.9 (1.0) -0.39 -0.67,-0.09 0.008*
OUTCOMES OF INTEREST: Tangible Support 3.1 (1.2) 3.5 (1.1) -0.36 -0.69,-0.03 0.02*
Parenting Stress - Parenting Stress Index Short Form (PSI-SF) Financial Impact of Child (FIQ)+ 4.0 (5.6) 2.6 (3.4) 1.19 -0.07, 2.46 0.06
36 items make up 3 subscales: Parental distress, Parent-child * p<0.05 for parents of children enrolled in EI vs not enrolled in EI. Adjusted for parental employment status and MCHAT score.

Dysfunctional Interaction, Difficult child.

Social Support - Medical Outcomes Survey Social Support (MOS-SS) Key Findings
19 items make up 4 subscales: Emotional/informational support, Levels of parenting stress in our sample were high; average score of PSI in the clinically significant range
Tangible support, Positive social interaction, Affectionate support No significant difference in parental stress between families enrolled in EI and those not receiving EI services.
EI enrollment associated with lower social support; trend toward greater perceived financial impact of the child
Childs impact on family - Family Impact Questionnaire (FIQ)
50 items make up 6 subscales: impact on social relationships,
finances, feelings about parenting, siblings, and marriage. Conclusions
Parents of vulnerable children at risk for ASD report high levels of stress
ANALYSIS:
Linear regression models to assess relationship between EI Enrollment in EI does not mitigate stress levels
enrollment and each outcome of interest (PSI, MOS-SS, and FIQ) Future work should explore strategies to decrease stress and increase social support for families from under resourced communities
This study was funded by the National Institute of Mental Health (R01MH104355). We acknowledge the support of the Developmental and Behavioral Pediatrics Research Network (DBPNet). DBPNet is supported by cooperative
agreement UA3MC20218 from the Maternal and Child Health Bureau, Health Resources and Services Administration, U.S. Department of Health and Human Services. This information or content and conclusions are those of the author
and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.