Community-Engaged Adaption and Implementation of an
Evidence-Based
Parenting Intervention for Parents of Children Recently
Diagnosed with ASDRobert 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-to-
parent 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 real-
world 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.
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, three-
hour 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.
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:
IMPLEMENTATION TEAM
References
Reviewed curriculum outline as a group and recorded notes on
content order and initial ideas on content adaptations.
Reviewed sessions individually and recorded comments, thoughts,
and questions about applicable/non-applicable content, and then
processed together.
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.
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
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
Phase 1: Curriculum Review and Preliminary Outline
Phase 2: Engagement of Key Stakeholders
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
Phase 3: Initial Curriculum Design
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.
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.
Phase 4: Intervention Pilot
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.
Next Steps
For more information, contact:
Robert Hock, PhD
[email protected]
(803) 777-5861
