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