Parental Satisfaction, Acceptability of Recommendations

Parental Satisfaction, Acceptability of Recommendations
and Moderating Variables in a University-Based Autism
Diagnostic Clinic
Leslie Markowitz, PsyD, Andrea Witwer, PhD, Kathy Lawton, PhD, Julie Stefanski, AuD, Thalia Farietta, BA, Isaac Aziramubera, BS, Tara Benninger, BS, Dana Kamara, BS
The Ohio State University Nisonger Center
Introduction
This study seeks to understand parents’ experiences with the
diagnostic process at two clinics in the Nisonger Center. While
research is beginning to emerge on parent satisfaction with the
diagnostic process (e.g. Goin-Kochel, Mackintosh, & Myers,
2006), little is known about recommendation adherence and
barriers encountered. In prior research, barriers to treatment have
been found to be strongly associated with adherence to
psychological recommendations (MacNaughton and Rodrigue,
2001). We are specifically interested in the types of barriers
encountered by families and how these barriers impact parental
satisfaction and adherence to recommendations. Through this
research, we hope to gain a better understanding of parents’ level
of satisfaction with our clinics, and ability to follow-through on
treatment recommendations in order to maintain and improve
family-centered practice.
Sample Questions
Results
Questionnaire items are separated into three different sections:
1)  Quality of services, 2) Diagnostic process/ feedback, and
3) Recommendations. Sample questions are listed below in Figure 1.
Figure 1. Sample Questions from Nisonger Center Clinic Survey
How satisfied are you with the way the news of your child’s diagnosis was
given to you?
1
Very
dissatisfied
2
Dissatisfied
3
4
5
6
7
Slightly
Neutral Slightly Satisfied
Very
Dissatisfied
Satisfied
Satisfied
I feel the recommendations made by the professionals at the Autism
Spectrum Disorders Clinic for my child are:
1
2
Very
Inappropriate
Inappropriate
3
Neutral
4
Appropriate
5
6
Very
Not Sure
Appropriate
Methods for Data Collection/Hypotheses
•  Last year, we developed a questionnaire (likert-type and short
answer) that assessed parent satisfaction, recall of
recommendations, likelihood of adhering to recommendations,
and anticipated barriers. This year, we refined the questionnaire
to gather more specific information on whether we are meeting
family needs and whether families are adhering to treatment
recommendations. We also improved our data collection
process, in order to enroll more families and have better followup retention.
•  The questionnaire is distributed on the day of the final
appointment with the family, following their feedback session.
Follow-up phone calls are made three weeks, three months, and
six months following the evaluation. We follow the families over
time in order to gather longitudinal data on barriers encountered,
recommendation adherence, and whether satisfaction changes
over time.
•  We hypothesize that there will be a positive relationship
between parent satisfaction and recall of recommendations. We
also predict that the amount of perceived barriers will be
inversely related to family choice of recommendations to pursue.
We believe that families endorsing socio-economic stressors
(e.g., monetary limitations, lack of transportation) will report
pursuing fewer professional therapeutic services across
disciplines. Additionally, we will examine possible moderators
such as demographics, IQ, adaptive behavior, diagnosis, and
parental stress.
Diagnoses varied widely among children/adolescents, with five
children receiving dual diagnoses. Most commonly diagnosed was
Autism Spectrum Disorders (38%), followed by Attention Deficit
Hyperactivity Disorder (30%), Intellectual Disability (7%),
Oppositional Defiant Disorder (7%), Language impairment (15%),
Anxiety Disorder (7%), and three children received no diagnosis
(23%).
On the questionnaire, 85% of parents (N=11) reported being “very
satisfied” with the quality of service received at the Nisonger
Center, while 15% (N=2) reported being “satisfied”. The initial
statistical plan included exploring the relationship between
diagnoses, assessment scores and family/child variables, as well
as to identify moderators. However, due to the heterogeneity of the
sample, uniformly high satisfaction ratings, and a small sample
size, such analyses were precluded. Yet, many respondents
identified potential barriers, which are displayed below in Figure 3.
Figure 3. Reported Barriers to Completing Recommendations
Demographics
Childcare for other children
As of March, 13 families had completed initial surveys. All
participants were parents of children seen in the clinic (N = 12M,
1F). The ages of the children ranged from 4 to 16 years. Our sample
was 92% (N=12) Caucasian and 7% (N=1) African-American. 61%
of the children came from two parent households and 39% came
from single parent or partnered, but unmarried, households. Parental
education ranged from some high school to having a graduate
degree. Maternal and paternal education was endorsed most for
high school diploma or GED (maternal=31%, paternal=38%)
Additionally, participant reported income is reported below in Figure
2.
Figure 2. Reported Yearly Income
Other family members' activities
Child's other therapies
Work schedule
No extra income for services
Lack of insurance coverage
Unable to afford insurance copay
Long waitlists
Delays in insurance authorization
Lack of provider in home community
Travel distance too far
Transportation problems
more than
$90,000
0%
31%
>$20,000
$20,001-$40,000
47%
$40,001-$60,000
$60,001-$90,000
more than $90,000
7%
15%
0%
5%
10%
15%
20%
25%
30%
35%
40%
45%
50%
Preliminary results suggest that barriers (actual or perceived) are a
central aspect of families concerns in securing services for their
children. Thus, clinicians need to be aware of these, and provide
appropriate referrals for services that the family can reasonably
attain. Additionally, we aspire to investigate our hypotheses through
statistical analyses, once we have collected longitudinal data to
further investigate parental satisfaction and recommendation recall
over time.
Funded by the Maternal and Child Health Bureau Grant T73MC00049