Mind the Gap (AIR-B3)

NCT03711799 | Completed

• 1 other identifier: 17-000029
• Study Type: interventional
• Target: 156
• Locations: 1 country
• Sites: 3

Brief Summary

There has been a lack of research on the unique needs of families with autism in the African-American and Latino communities. The process of screening, evaluation and treatment for children with autism can be long and arduous, especially in these communities. This often means that the best interventions for children with autism are not reaching minority communities. For many families, the complexity of the services system leads to a long wait after the initial diagnosis before accessing intervention. This means that the children have delayed access to treatment. Mind the Gap is a study that seeks to provide immediate and culturally appropriate support for families who have just received diagnosis but have yet to receive treatment. This support will be provided in families' native languages and, through the use of phone and video sessions, can accommodate busy schedules. Mind the Gap participants will be randomized to receive one of two conditions, which are 1.Resources only (online training modules and paper or on line resource lists, but no peer coaching) 2. Peer coaching (will receive all online training access). The peer coaches will be recruited from local parent support agencies. They will not be professionals in the field of ASD, but they will be trained by the research group on how to access the online tools and how to work whith families. They will contact the participants via phone or video conference on a weekly basis and an in- person visit per month for 3 months. Peer coaches will have a monthly call with participants for an additional nine months.We hope that this study will help the African American and Latino communities receive services sooner than currently reported. We also hope that in the future, parent organizations will use these tools to help families that have recently received an ASD diagnosis will us navigate the complex system of attaining services.

Conditions

Autism Spectrum Disorder

Keywords

Autism Services; Mind the Gap; Peer Coach

Outcome Measures

Primary Outcomes (1)

• Change in Service Access Form from month to month

  This form was created within the research group. It is used monthly after entry to document the services the participants would like to get and the ones they are currently receiving.

  Monthly from baseline and up to a year after baseline

Secondary Outcomes (7)

• Family Empowerment Scale (Koren, DeChillo & Friesen, 1992)

  baseline, 4 months, 8 months and a year after baseline

• Caregiver Agency Questionnaire (adapted from Kuhn & Carter, 2006)

  baseline, 4 months, 8 months and a year after baseline

• Caregiver Autism Knowledge Questionnaire (adapted, Kuhn & Carter, 2006)

  baseline, 4 months, 8 months and a year after baseline

• Caregiver Stigma Scale (McKay & Cavaleri, 2009)

  baseline, 4 months, 8 months and a year after baseline

• Satisfaction Survey

  4 months post baseline

Study Arms (2)

Resource Only Group

NO INTERVENTION

Families randomized to the resource only condition will have access to training materials in web-based and paper formats. The will receive the internet address to access web-based trainings, handouts and materials, including instructions for each activity and they will receive a binder that includes the information that is available on line so they can access the information even if they do not have internet access. Families in the resource only condition will not have access to a peer coach through the program. They will not have access to the on-line support community.

Peer Coaching Group

EXPERIMENTAL

Families randomized to peer coaching will receive assistance with navigating the training program and accessing the system from a trained peer parent coach. Peer coaches will, as much as possible, be culturally and language-matched with the participant family.

Behavioral: Access to services via peer coaching

Interventions

Access to services via peer coaching BEHAVIORAL

This intervention will allow for half of the participants, randomly selected, to get help navigating the system of acquiring services for their child. These participants will be assisted by a coach who are also parents of a child with autism and have already been through the process.

Peer Coaching Group

Eligibility Criteria

• Age: 2 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Child (0-17), Adult (18-64), Older Adult (65+)

You may qualify if:

• child under 9 years of age with a diagnosis of ASD
• no receipt of ASD specific services outside of school (family may still qualify if child is connected with a regional center/EI, but not yet receiving services), defined as (a) services obtained through insurance based on having an ASD diagnosis;or (b) receiving services through 0-3 that can only be accessed with an ASD dx (e.g., intensive in home EIBI)
• family income is under 250% of the federal guidelines for poverty rate
• English or Spanish speaking.
• parent of a child with autism or other similar developmental disorder
• a child over 9 years old and at least 5 years post-diagnosis
• some experience working with parents and/or understanding of the service system and
• fluent in English and/or Spanish.

You may not qualify if:

• child is in out-of-home placement or foster care.
• Cannot commit to the times and requirements of the study.

Sponsors & Collaborators

• Health Resources and Services Administration (HRSA): lead
• University of Rochester: collaborator
• University of Pennsylvania: collaborator
• University of California, Davis: collaborator
• Drexel University: collaborator

Study Sites (3)

UC Davis

Davis, California, 95817, United States

Location

University of Rochester

Rochester, New York, 14642, United States

Location

UPENN

Philadelphia, Pennsylvania, 19104-2648, United States

Location

Related Publications (1)

• Iadarola S, Pellecchia M, Stahmer A, Lee HS, Hauptman L, Hassrick EM, Crabbe S, Vejnoska S, Morgan E, Nuske H, Luelmo P, Friedman C, Kasari C, Gulsrud A, Mandell D, Smith T. Mind the gap: an intervention to support caregivers with a new autism spectrum disorder diagnosis is feasible and acceptable. Pilot Feasibility Stud. 2020 Sep 7;6:124. doi: 10.1186/s40814-020-00662-6. eCollection 2020.

  PMID: 32944273 DERIVED

MeSH Terms

Conditions

Autism Spectrum Disorder

Condition Hierarchy (Ancestors)

Child Development Disorders, Pervasive; Neurodevelopmental Disorders; Mental Disorders

Study Design

• Study Type: interventional
• Phase: not applicable
• Allocation: RANDOMIZED
• Masking: NONE
• Purpose: TREATMENT
• Intervention Model: PARALLEL
• Sponsor Type: FED
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Professor/PhD

Study Record Dates

• First Submitted: October 12, 2018
• First Posted: October 18, 2018
• Study Start: April 1, 2018
• Primary Completion: August 1, 2020
• Study Completion: August 31, 2020
• Last Updated: February 9, 2022

Record last verified: 2022-02

Locations

US (3)