Maternal and Child Health Research Program

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Supporting the well-being of families of young children with autism spectrum disorders

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Project Number: R40 MC 15596-02
Grantee: Boston Medical Center
Department/Center: Pediatrics
Project Date: 9/1/2009

Final Report

Supporting the well-being of families of young children with autism spectrum disorders Final Report (PDF) Exit Disclaimer

Principal Investigator

Emily Feinberg, Sc.D.
Assistant Professor of Pediatrics
88 East Newton Street Vose Hall, Room 321
Boston, MA  02118-2393
Phone: 617-414-3667 (1425)
Email: emily.feinberg@bmc.org / emfeinbe@bu.edu

Age

  • Maternal
  • Toddlerhood (1-2 years)
  • Early Childhood (3-5 years)

Race/Ethnicity

  • Hispanic/Latino

Abstract

The objective of this project is to determine whether an evidenced-based empowerment strategy, Problem Solving Education (PSE), targeted to mothers of young children with autistic spectrum disorders (ASDs), promotes family well-being by decreasing the burden of maternal depressive symptoms and parenting stress and improving maternal social functioning. Studies consistently report high levels of psychological distress, including depressive symptoms and parenting stress among parents of children with ASDs. Mothers are the most severely affected family member. Almost 40% report levels of clinically significant parenting stress and between 33% - 59% of mothers report depressive symptoms warranting psychiatric evaluation. These data suggest a need for interventions that specifically address parental mental health. The proposed intervention augments recommended behavioral and development services, focusing specifically on strengthening maternal problem solving abilities as strategy to prevent and attenuate depressive symptoms and parenting stress. It aims to support families during a critical juncture - when they are confronted with a new diagnosis and are asked to navigate a complex service system on their children's behalf. We propose a randomized control trial involving 140 English or Spanish speaking mothers who have children <4 years with confirmed ASDs. Mothers in the intervention group will receive 6 sessions of PSE. Control group subjects will receive usual care. We plan for 15 months of rolling subject enrollment and 6 months of follow-up for each mother-child pair. The intervention will be embedded in two settings that provide services to young children with ASDs - Early Intervention (EI) programs and specialty developmental assessment clinics. Randomization will occur independently at EI and developmental assessment clinic sites. We will employ stratified block randomization, stratifying by child level of functioning within each site. Problem Solving Education (PSE) is an evidence-based behavioral intervention rooted in the theory that daily problems cause and maintain depressive symptoms, and that managing these problems systematically can reduce symptoms and improve functioning. PSE sessions will be delivered in the home or at a place determined by the mother as an adjunct to customary services provided by each setting. Mothers in control group will receive the standard of care at the specific recruitment site. The study's primary outcomes are maternal depressive symptoms and parenting stress. Secondary outcomes are maternal functional outcomes measured in 3 domains: 1) problem solving skills; 2) social functioning and 3) behavioral activation. Data collection will occur in person through verbal administration of study instruments in subjects' homes or another location of the subject's choosing. Data collection will occur at the three time points - baseline (T0), 3 months (T3), 6 months (T6). To estimate the effect of the intervention we will conduct an intention-to-treat analysis to compare the difference between intervention and control groups on the major outcome variables. We will conduct both unadjusted and adjusted analyses, controlling in the latter for stratification variables and individual level characteristics that differ between study groups. Additional exploratory analyses will be conducted to assess effect modification by recruitment site, child functioning, level of maternal distress, and coping style. Findings from the proposed study address a gap in the current knowledge base: the absence of adequately powered RCTs that examine the effects of interventions designed specifically to address depressive symptoms, parental stress, and social functioning among mothers of children with ASDs. Results will provide information that can guide program initiatives to improve family support services for families of young children with ASDs.

Publications

Listed is descending order by year published.

Feinberg E, Silverstein M, Ferreira-Cesar Z. Integrating Mental Health Services into Early Intervention Programs for Mothers of Children Newly Diagnosed with Autism. Psychiatric Services. 2013: 4 (9) 930.

Feinberg E, Augustyn M, Fitzgerald E, Sandler J, Ferreira-Cesar Suarez Z, Chen N, Cabral H, Beardslee W, Silverstein M. Improving maternal mental health after a child's diagnosis of autism spectrum disorder: results from a randomized clinical trial. JAMA Pediatr. 2014 Jan;168(1):40-6.

Keywords

Autism, Parenting, Depression, Stress, Mental Health & Wellbeing, Early Intervention, Developmental Disabilities, Special Health Care Needs

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