Improving Family Functioning Following Diagnosis of ASD: A Randomized Trial of a Parent Mentorship Program

Background:  Despite the growing prevalence of autism, there is a confusing array of treatment options available and little clinician support to families in acting on the treatment recommendations. Therefore families must often coordinate their own services. As a result, there is tremendous need for interventions that will help families understand and access the existing systems of care. Parent-to-Parent (P2P) mentoring programs are one strategy do this; however, there are few empirically validated P2P programs.

 The Colorado Parent Mentoring Program (CPM) is a comprehensive support program that provides two sources of support: 1) parent training and education, and 2) P2P mentoring. Parent mentors were trained in a two-day program and paired with mentees. For mentees, study staff provided individualized education through individualized Action Plans. This is a family-centered process for determining treatment priorities, accessing resources, strategies for school collaboration and family care. They then received in -depth training regarding navigating systems of care in Colorado. Following these meetings, Mentors continued to support the family for 6 months. 

Objectives:  Develop and test a systematic P2P and parent education model.

Methods:  CPM evaluated with a randomized controlled trial (RCT) with participants randomly assigned to either active participation (n=29) or a waitlist control group (n=32). Families were recruited following diagnosis from partner clinics and complete assessments prior to participation. Families in the active group are paired with a trained mentor and receive Action planning/Navigation meetings within 3 months of diagnosis. They then interacted with mentors at least monthly for 6 months. Waitlist control families received only care through usual sources. Post measures are collected after 6 months for all participants. Measures include satisfaction with program, Family Quality of Life Scale, Parenting Stress Index, Parenting Sense of Competence Scale, Monthly service utilization and qualitative interviewing. 

Results:  

Quantitative—Linear mixed models were used to assess the program’s impact between the two groups over time. Significant improvement in Satisfaction with Disability Related Services was found in the active group. The waitlist group showed increased Rigidity in family functioning.

 Qualitative—Thematic analysis of exit-interviews by two separate reviewers uncovered 6 major themes: 1) the program is highly acceptable and satisfying, 2) action planning is highly valuable in prioritizing services and locating access points, 3) families appreciate having actionable items to address their child’s and family’s needs, 4) families feel more empowered, less isolated and have a greater sense of community, 5) families often make a wide variety of intervention choices regardless of education, and 6) families appreciate having mentor for ongoing support.

Conclusions:  The CPM program is a promising family support program with preliminary efficacy for improving satisfaction with care and preventing rigidity in the family dynamic. Parent mentors can be effectively trained to provide emotional support to other parents of children with ASD. Newly diagnosed families appear to have improved functioning as a result of this intervention; although, more research is needed on how best to support families.