Maternal and Child Health Research Program

Advancing Applied MCH Research

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Comprehensive Support for Families with Autism: A Parent-based Mentoring Approach

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Project Number: R40 MC 22643
Grantee: University of Colorado Denver
Department/Center: Psychiatry and Pediatrics / JFK Partners
Project Date: 9/1/2011

Final Report

Pending

Principal Investigator

Cordelia Rosenberg, PhD
Professor/Director of JFK Partners
13121 E 17th Avenue, C234, 5th Floor
Aurora, CO  80045-2535
Phone: 303-724-7680
Email: cordelia.rosenberg@ucdenver.edu

Age

  • Toddlerhood (1-2 years)
  • Early Childhood (3-5 years)
  • Middle Childhood (6-11 years)

Abstract

Autism Spectrum Disorder (ASD) is a lifelong developmental disability that affects about 1% of the population. In Colorado, the average age of diagnosis is 5 years of age. Families with a child who receives a diagnosis are provided little guidance or support following diagnosis. They are often left wondering how to access existing services and may have difficulty coping with the reality of living with a child who has ASD. This study will develop, evaluate and disseminate a comprehensive support program for families who have children recently diagnosed with ASD, and will prepare local community organizations to implement this program following the completion of this research. The Partners in Autism (PIA) program will utilize two sources of support: 1) expert education and assistance, and 2) a parent-to-parent mentoring program. These two sources of support will focus on the critical period initially after diagnosis through the first year following diagnosis. Experts in the field of autism will provide education and assistance about the system of treatment, access to care in Colorado, and develop family specific Action Plans. These Action Plans will help the family develop a comprehensive strategy for determining the child's treatment needs, how to access care, strategies for collaboration with the school system and family care. The focus of support is on comprehensive planning for the child and family so as to optimize outcomes and quality of life. Along with the education and action planning, a parent mentor will continue to support the family throughout the year. Parents of children with ASD who have already lived with the diagnosis for several years are a rich source of expertise. They have valuable perspectives and can provide a constant source of information and emotional support. Mentors will be trained in how to provide appropriate mentorship, and will meet with their mentee family individually and in activities supported by this program. Phase-1 of this project will develop the PIA program, and assess its feasibility and acceptability to participants through focus groups and interviews. Phase-2 will evaluate the effectiveness of the PIA program relative to treatment as usual, focusing on family impact, family quality of life, family adjustment, parental sense of efficacy and access to care. These data will be collected through parent-report questionnaires. In Phase-3, we will disseminate the program to rural and national organizations and will assess interest and utilization of the PIA program through questionnaires sent to interested organizations. This research will be conducted in partnership with local community organizations (Autism Society of Colorado, Family Voices Colorado), which will allow these organizations to implement the program beyond the term of this research. This research will also provide a better understanding of the impact of programmatic support on a family's ability to cope with their child's disability long term, and how to improve their wellbeing.

Publications

Pending

Keywords

Autism, Coordination of Services, Early Intervention, Health Education & Family Support, Mental Health & Wellbeing, Parenting, Stress

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