COLLABORATING WITH COMMUNITY PARTNERS:

IMPACTS ON THE COURSE OF RESEARCH

Elizabeth McMahon Griffith, PhD1; Kristen Kaiser, MA1; Ann Folan, MA1; Hayley Crain, PsyD1; Susan Hepburn, PhD2
University of Colorado School of Medicine1; Colorado State University2

LESSONS LEARNED
BACKGROUND RESEARCH PLAN
Determine what families of young children with ASD, who have participated previously in a 1. CAC recommended that families need context and the
Research on parent-mediated interventions for very
parent-mediated intervention, view as meaningful outcomes of that experience. Build a battery of opportunity to talk about their experiences with
young children with autism spectrum disorder diagnosis & intervention before specific outcomes.
existing measures that match those meaningful outcomes. Utilize the measures to assess the
(ASD) typically focuses on child outcomes. While
meaningful outcomes while families are actively participating in a parent-mediated intervention. 2. CAC requested that the RT look for measures that:
important, thoughtful exploration of parent and Utilized more strength-based language,
family outcomes is also needed. These earliest
CAC CAC CAC CAC
Were able to be completed more quickly, and
Interview Assessment Dissemination

Were mixed in terms of mode of completion (i.e., not

Progress
Questions Measures Plan
interventions set the stage for lifelong patterns of #1 #2 #3 #4

just paper questionnaires, but also online, interaction,

interaction, health, and well-being. The current
and interviews).
project was designed to advance this work by
partnering with families as key-stakeholders using
COLLABORATIVE ACTION 3. Active engagement of a Family Liaison on the RT was
very helpful.
the strategies of Community Based Participatory CAC: Develop interview questions for RT: Finalize interview
Research (CBPR; Israel, et al, 1998). qualitative study Gather data from 2 focus groups & 15 4. Working collaboratively takes more time.
Pilot interviews & reflect phone interviews of parents of children
with ASD; transcribe and code the 5. Ensuring fair titles, compensation, and access requires
responses pre-planning IRB.
GOAL OF STUDY
6. Researchers need to resist the urge to control the
To advance research on parent-mediated early Derive themes
CAC: Reflect on the coding scheme process and instead participate in the process.
intervention for ASD by learning about the
used and the themes that emerged
processes and outcomes valued by families who RT: Revise wording of some
have participated in evidence based programs. codes/themes and reconsider the NEXT STEPS
Review revised codes/themes and importance of focusing on the process
discuss the implications for which of intervention as well as the outcomes 1. Interviews are being conducted with Spanish-speaking
constructs should be included as
COLLABORATIVE PARTNERS outcome measures
parents.

Research Team (RT) 2 researchers in the field of
autism and/or public health; 2 researcher/clinicians
working with young children with ASD and their
families; 1 LEND Family Liaison; 1 professional
research assistant/clinician
Community Advisory Council (CAC) 9 parents
of at least one child diagnosed with ASD who had
participated in an early intervention
CAC: Review the candidate measures
and provide input on acceptability,
burden, and relevance
Pilot measures & reflect
mediated intervention
RT: Mine the research for
psychometrically validated measures of
the outcomes valued by the families
RT: Revise the battery to be used
during families participation in a parent-
2. The CAC will reconvene to discuss results and review a
draft of a parent perspective paper for a peer-reviewed
journal. Lead author is Family Liaison.
3. The next step study that integrates the parent
perspectives of meaningful outcomes is ongoing and
results will be available in a few months.
4. The CAC will make recommendations about the
dissemination plan/products from the projects.
Determine CAC role in these activities. Discuss what will
benefit the community going forward.

This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under R40MC27703, Parent Mediated Interventions in Autism: The Search for Meaningful
Outcomes. This information or content and conclusions are those of the authors and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government. The authors report
no conflicts of interest.