You are on page 1of 1

PARTNERING WITH FAMILIES TO DETERMINE

MEANINGFUL OUTCOMES OF PARENT MEDIATED INTERVENTIONS FOR YOUNG


CHILDREN WITH AUTISM SPECTRUM DISORDER
Kristen Kaiser, MS; Ann Folan, MA; Susan Hepburn, PhD; Elizabeth McMahon Griffith, PhD
University of Colorado School of Medicine & JFK Partners

BACKGROUND
There has been a steep rise in the prevalence of
Autism Spectrum Disorder (ASD; 1:68; CDC 2014)
and a drop in age of reliable diagnosis into
toddlerhood. Despite increasing reliance on parent
mediated interventions for these very young children
with ASD, families often have little voice in shaping
intervention models. In addition, parent and family
outcomes are typically not explored, which is
particularly concerning given frequent findings of high
levels of stress in this group (Karst & Van Hecke,
2012). The earliest interventions set the stage for
lifelong patterns of interaction, health, and well-being,
and they must prepare a child and family for success
rather than adding burden at this vulnerable time
following early diagnosis.

METHODS
This project is conducted in partnership with a
Community Advisory Council (CAC) comprised of 9
families (8 mothers, 7 Caucasian, 3 Hispanic, 5 English
as a Second Language) with a child with ASD.
A set of semi-structured interview questions was

ANALYSIS
Two coders utilized ATLAS.ti software (Muhr, 1993) to
independently review transcripts of the interviews and
focus groups, to develop a set of codes. Following
consensus on codes, a second round of independent
coding was undertaken. Consensus codes were used to
identify emerging themes. This content was then
presented to the research team and the CAC for
determination of themes and saturation.

developed with the CAC. Questions addressed the


impacts of this type of intervention on parents, their
child, and their family.

I think he felt more confident that we couldinteract


with him

This discussion was elicited through:

very intense time in our lives.

so wed have disagreements when we werent


in the middle of therapy.

2 Focus Groups
With 16 parents (15 mothers; 100% Caucasian, 19%
Hispanic) who had participated in parent mediated
intervention with their young child with ASD using:
Early Start Denver Model (Rogers & Dawson, 2010)
Hanen More Than Words (Sussman, 1999)

OBJECTIVE

Phase 1 of this project illuminated several key themes


that families who participated in a parent mediated

important. Additional work is being done to ensure


saturation. Themes will be reviewed again by the CAC

RESULTS
Results from this qualitative data analysis were categorized
into six themes illustrating the impact of the parent
mediated interventions on families lives, relationships, and
child outcomes:

Intervention helped parents better understand child

Phase 2 will measure the identified meaningful child,


parent, parent-child, and family level outcomes while
families participate in coaching sessions to learn the
strategies of the Early Start Denver Model.

Intervention created changes in parenting


Parent developed context for autism, and put their
Uptake of strategies-Parent changed interactions
with child.

As she started getting a little olderstarted to


change a little bit more, I wouldve liked someone to
be thereI couldnt work on the same goals because
she was a little bit different.

Intervention as a series of short-term therapies for a

Community Based Participatory Research principles

parent mediated interventions for children with ASD.

CONCLUSIONS

Change in quality of the parent/child relationship.

Partner with families as key-stakeholders using

(CBPR; Israel, et al, 1998) to advance knowledge of

gave us a way to do that

and aligned with measures for Phase 2 of the project.

childs challenges into perspective.


It increased the connection between uswhen
you stop asking questions and take time to let them
come to you more, you build greater intimacy...

how to just live together as a family unit, and this

intervention with their young child with ASD feel are

11 Individual Interviews, and


but it really affected my healthIt was a very,

There was every sort of therapy out there but not

I became a more patient parent, better


understanding of whats going onI think it made
me feel less hopeless

long-term condition.

Family-oriented intervention improved family functioning.


Intervention highlighted differences in parenting
philosophies/beliefs.

The first phase of this project engages families, who


have participated previously in a parent mediated
intervention, in discussion about the outcomes they
attribute to that experience.

Themes were analyzed using a coding, consensus, and


comparison methodology (Willms et.al. 1990), which
followed an iterative approach rooted in grounded
theory (Glaser & Strauss 1967).
honestly dont remember which kid I did this with

Intervention very impactful to family life:


Career
Schedule
Family dynamics

This project is/was supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under MCH R40MC27703-01-00 and Parent Mediated Interventions in Autism: The Search for
Meaningful Outcomes for $878,559. This information or content and conclusions are those of the author 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.