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Community-Engaged Adaption and Implementation of an Evidence-Based

Parenting Intervention for Parents of Children Recently Diagnosed with ASD


Robert Hock, PhD1, Marissa E. Yingling1, MSW, Amy Holbert, MSW2, Mark Feinberg, PhD3
1College of Social Work, University of South Carolina, Columbia, SC, 2Family Connection of South Carolina, Columbia, SC,
3Pennsylvania State University, State College, PA

INTRODUCTION
This project represents the combined efforts of Dr. Hock (UofSC), Dr. Feinberg (Penn
State), and Family Connection of SC. The 2013 Federal Interagency Autism
Coordinating Committees Strategic Plan calls for the development of interventions
that improve family quality of life and child outcomes by helping parents navigate the
pathway of autism spectrum disorder (ASD) services.1 In response, we led a
community-engaged adaptation of an evidence-based co-parenting intervention
(Family Foundations) combined with an innovative delivery mechanism (parent-toparent support) to create Parent Navigators, a brief, cost-effective intervention with
the potential for widespread dissemination.
The purpose of this presentation is two-fold:
1. To present our systematic, community-engaged adaptation process informed by
existing frameworks for adapting evidence-based interventions (EBIs) in realworld settings.
2. To describe our experiences convening an implementation team to plan for and to
monitor the implementation of Parent Navigators in a real-world setting.

ADAPTATION PROCESS
There are three steps in the adaptation process that are common across existing
frameworks: assessing intervention elements, assessing applicability issues in the
local setting, and resolving these issues with both intervention developers and the local
practitioners.7 Yet the overviews provided in most frameworks lack details necessary for
replication, specifically regarding identifying population differences and deciding on
modifications.8 Also, while the authors of these frameworks recognize that collaboration
between intervention developers and stakeholders is vital for successful adaptation, the
target population of the EBI is seldom included. Researchers have recently expressed
the need for greater involvement of stakeholders in the adaptation process.8
Informed by current frameworks, our adaptation process is guided by program theory and
by recommendations from existing research, practitioners, parents of children with ASD,
parent-to-parent support specialists, intervention developers, researchers, and parents of
children with ASD. We have engaged in 3 overlapping, iterative phases, including:

Phase 3: Initial Curriculum Design


Intervention Developer/Researcher drafted all sessions of the adapted curriculum
FF Developer reviewed all drafts and provided feedback
Conducted video-recorded interviews with experienced parents of children with ASD
to create video modules for the curriculum
Role-played sessions with a mother and father of a child with ASD. Elicited feedback
from the couple and from observers (i.e., researchers, parent mentors, practitioners)
on overall content, sequence and amount of content, and language.
RESULTS: Draft of All Six Sessions, Including Video Modules

Next Steps
Phase 4: Intervention Pilot

Phase 1: Curriculum Review and Preliminary Outline


Reviewed curriculum outline as a group and recorded notes on content order and
initial ideas on content adaptations.

We will elicit feedback from participants on the acceptability of the intervention, or the extent to
which parents perceive the intervention as relevant, effective, and reasonable.9
Phase 5: Curriculum Revision
We will incorporate feedback gathered in Phase 4 to revise the curriculum.

Reviewed sessions individually and recorded comments, thoughts, and questions


about applicable/non-applicable content, and then processed together.

Original Intervention
Family Foundations is an EBI that targets parents who are expecting a child during
their transition to parenthood. It is delivered in nine group-based, in-person, threehour classes (i.e., five pre-natal classes and four post-natal classes) collaboratively
led by both a female and male instructor. The interventions underlying theoretical
framework, which emphasizes the importance of coparenting within a family systems
perspective, is applicable to parents of children with ASD. In this perspective,
relationships between all family members, including coparents, are considered.2
Research shows that coparenting matters for child, parent, and family outcomes.3-6

Parent Navigators
The adapted intervention consists of 6 weekly sessions delivered by experienced
parents of children with ASD (parent mentors) to parents of children recently
diagnosed with ASD. Sessions last approximately 1.5 hours.

Read intervention manuals adapted from FF and other parenting intervention


manuals to inform delivery structure and appropriate in-home procedures.
Identified non-applicable FF goals and generated new, appropriate goals.
Conducted literature reviews (e.g., best practices in in-home interventions, influence
of parent conflict on children with ASD) to inform new content.
Based on the literature, we established the critical elements of the adapted
intervention (i.e., brief, in-home, ASD navigation education and content).
Through an iterative process, we mapped FF core content, reduced and reorganized
content, and removed, modified, and added activities, scripts, presentation
materials, and homework assignments to suit an in-home vs. group delivery
mechanism.

IMPLEMENTATION TEAM
In addition to completing the adaptation, we are following best
practice in Implementation Science to foster the adoption and
implementation of Parent Navigators in a real-world setting. As
part of this effort, we convened an Implementation Team. This
Team is overseeing the pilot and will prepare for a large clinical
trial. To date, the Team has held eight meetings to discuss
various topics, such as blending program delivery and research,
barriers to implementation (e.g., staff buy-in, participant
recruitment), and barriers to sustainability (e.g., funding,
staffing). The Team is working to ensure that the pilot is
implemented in Family Connections existing organizational
structure to ensure successful implementation.

Held bi-weekly meetings with FF developer to inform content adaptation.


Based on the literature, we established the critical elements of the adapted
intervention (i.e., brief, in-home, ASD navigation education and content).
RESULTS: Preliminary Curriculum Outline and Questions for Stakeholders

Phase 2: Engagement of Key Stakeholders


Conducted six individual interviews with key stakeholders, including researchers,
practitioners, parents of children with ASD, parent-to-parent support specialists, intervention
developers, researchers, and parents of children with ASD
Coordinated focus group of parent mentors at Family Connection, SC.
Partnered with Family Connection to convene an Implementation Team
RESULTS: Clarity of Curriculum Content Priorities and Goals of Intervention

References
1. Interagency Autism Coordinating Committee (IACC). IACC Strategic Plan for Autism Spectrum Disorder (ASD)
Research 2013 Update. Apr 2014.
2. Hastings RP, Kovshoff H, Ward NJ, Espinosa F degli, Brown T, Remington B. Systems analysis of stress and
positive perceptions in mothers and fathers of pre-school children with autism. Journal of Autism and Developmental
Disorders. 2005;35(5): 635644.
3. Kelly AB, Garnett MS, Attwood T, Peterson C. Autism spectrum symptomatology in children: The impact of family
and peer relationships. Journal of Abnormal Child Psychology. 2008;36(7):10691081.
4. Brobst JB, Clopton JR, Hendrick SS. Parenting children with autism spectrum disorders: The couples relationship.
Focus Autism Other Dev Disabl. 2009;24:38-49.
5. Ly A. It's All in the family: Marital And coparenting quality in families of children with and without autism spectrum
disorders [e-book]. US: ProQuest Information & Learning; 2013.
6. Hock R, Kinsman A, Ortaglia A. Examining treatment adherence among parents of children with autism spectrum
disorder. Disability And Health Journal [serial online]. July 2015;8(3):407-413.
7. Jansen SC, Haveman-Nies A, Duijzer G, Ter Beek J, Hiddink GJ, & Feskens EJ. Adapting the SLIM diabetes
prevention intervention to a Dutch real-life setting: joint decision making by science and practice. BMC public health.
2013;13(1):457.
8. Chen EK, Reid MC, Parker SJ, & Pillemer K. Tailoring Evidence-Based Interventions for New Populations A Method
for Program Adaptation Through Community Engagement. Evaluation & the Health Professions, 2013;36(1), 73-92.
9. Finn CA, Sladeczek IE. Assessing the social validity of behavioral interventions: A review of treatment acceptability
measures. Sch Psychol Q. 2001;16(2):176.
For more information, contact:
Robert Hock, PhD
Roberth@sc.edu
(803) 777-5861