Mind the Gap (AIR-B3)



Status:Recruiting
Conditions:Neurology, Autism
Therapuetic Areas:Neurology, Psychiatry / Psychology
Healthy:No
Age Range:2 - Any
Updated:10/27/2018
Start Date:April 1, 2018
End Date:September 1, 2020
Contact:Connie Kasari, PhD
Email:kasari@gseis.ucla.edu
Phone:310-825-8342

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Mind the Gap Intervention

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.

We will recruit 140 (35 per site) families that will be referred by pediatricians, school
staff, family resource centers, early intervention agencies, DDS or self-referred using study
referral form, phone or web based referral system. The referral will include consent to be
contacted by the research team. All families will complete the screening survey by phone
(Section 19.2, item 3.1) with a member of the research team. This will be the only survey
that will determine eligibility. If eligible to participate, the participants will be asked
to give an oral consent. The oral consent will allow the research team to randomize the
family to either the Resource Only Group or the Peer Coaching Group. For both conditions, a
written consent will be later obtained when the research team meets with the families for the
intake survey and filling out the measures: Demographic, Family Empowerment Scale, Caregiver
Agency Questionnaire, Caregiver Autism Knowledge Questionnaire, Caregiver Stigma Scale and a
Satisfaction Survey only at end of study. Cultural Capital Survey will only be used once at
the intake survey meeting.

Parents will have access to ParentSquare, a safe, secure platform for program-to-parent and
parent-to-parent communication. ParentSquare has a registration feature where parents can
complete forms and sign up for courses and training modules and to broadcast training.
Parents can choose to be notified via text, email with reminders or updates through the app.
Messages can be private or broadcasted to larger group. There is also a document feature to
allow shared access between parent and coach of parent goals and progress between calls and
visits. Each site will be responsible for monitoring communication of their participants in
Parent Square along with Drexel University.

Participants will also include up to 40 peer coaches (10 per site) who will be trained to
provide coaching to families for 5 months as a family gains access to services. Peer Coach
Inclusion criteria: (1) parent of a child with autism or other similar developmental
disorder; (2) a child over 9 years old and at least 5 years post-diagnosis; (3) some
experience working with parents and/or understanding of the service system and (4) fluent in
English and/or Spanish.

Intervention Resource only. 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 Condition. 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. Families in this condition will receive a call from their peer coach who
will set up an initial, in-person meeting either in-home, clinic or community setting
depending on the participant preference. Based on the goal setting interview the peer coach
and the family will choose initial goals to complete in the first week, which will include
(1) completion of a training (typically the What is ASD? Training will be completed first);
(2) completion of one activity related to service access (e.g., phone access; call to service
provider; form completion); and (3) one self-care activity. A timeline for goals will be
developed together based on the family needs. Peer coaches will have a guide for rating the
importance of training and materials for the family based on the interview, and a guide which
will identify triggers (e.g. challenging behavior, safety concerns) to increase the level of
care. Peer coaches will set up a weekly call or video conferences (based on parent
preference), and monthly in person visit with the family to assess goal progress, provide
information, and set up subsequent goals and/or additional support if needed. Monthly visits
and weekly calls will continue for 12 visits up to 4 months). If parents choose to meet via
video conference, a secure, University approved method will be used by coaches (e.g., Zoom,
Skype, Webex). Three of the calls will be audio recorded for research purposes and to provide
feedback to the coaches. Calls will then be reduced to monthly for 9 months. Parent
participants can contact the peer coach at any time as well. Peer coaches will have a script
and materials for each call which will cover a specific topic identified with the family.
Peer coaches will have bi monthly supervision.

Peer Coach Training. Peer coaches will be hired or referred from local parent support
agencies . Compensation will be specific to each site. Peer coaches are parents of children
with ASD diagnosed at least 5 years ago, fluent in English or Spanish and have some
experience helping other families of children with ASD.

Peer coaches will attend four, 3-hour training sessions in the use of the intervention
materials. They will have a chance to practice using the materials and will learn about
issues related to safety and how to work with families. They will complete citi training and
additional training and role play in the confidentiality. Training will include learning to
use Parentsquare and role playing interviewing and discussing topics with families. Coaches
will have access to scripts for each potential topic and resources to address family needs.
Parent engagement in the intervention will also be measured by (1) enrollment in sessions;
(2) attendance at sessions and peer coach calls/meetings; (3) accessing on-line materials;
(4) completion of on-line trainings; and (5) project attrition.

Peer coaches will be expected to provide a 24-hour notice if they need to cancel a meeting or
session. They will also be expected to reschedule missed appointments. Also, peer coaches
will not be paid for missed appointments. If the peer coaches misses 3 meetings in a row
without proper cancellation, a member of the research team will have to resume his/her
activities.

Parent Inclusion Criteria:

- 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.

Peer Coach Inclusion criteria:

- 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.

Parent Exclusion Criteria:

- child is in out-of-home placement or foster care.

Peer Coach Exclusion Criteria:

- Cannot commit to the times and requirements of the study.
We found this trial at
3
sites
Philadelphia, Pennsylvania 19104
Principal Investigator: David Mandell, Sc.D
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60 Crittenden Blvd # 70
Rochester, New York 14642
(585) 275-2121
Principal Investigator: Suzannah Iadarola, Ph.D, BCBA-D
University of Rochester The University of Rochester is one of the country's top-tier research universities....
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1 Airport Road
Davis, California 95616
Principal Investigator: Aubyn Stahmer, PhD
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Davis, CA
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