What Autism Spectrum Disorder Services Do Families Want? : Results of a Brief Quality Improvement Survey in a Hospital-Based Outpatient Clinic

Background: Research consistently demonstrates that children with Autism Spectrum Disorder (ASD) require intervention to support their cognitive, language, social, and educational development (Reichow & Volkmar, 2010). Additionally, the quality and quantity of services available for children with ASD (Dawson, 2008) has continued to increase. However, caregiver satisfaction regarding their access to services and participation in services has remained moderately low (Brookman-Frazee et al., 2007). Thus, to improve caregiver satisfaction with services, increase family participation, and plan for future program development, better understanding of caregiver feedback regarding desired treatment services and possible barriers to participation in services is needed.

Objectives:  Although there are a wide variety of interventions available for children with ASD, minimal research has investigated which of the various treatment services caregivers are most interested in having their child participate in through an outpatient setting. Thus, the aims of the study were to: 1) assess the types of services that caregivers reported an interest in; 2) assess caregiver-reported barriers to participating in services; and 3) assess caregiver awareness of the services available at an outpatient clinic.

Methods: Following participation in either an evaluation or a treatment session with one of two specific ASD providers in an outpatient clinic, caregivers of children diagnosed with ASD (n = 28) completed a questionnaire developed by the clinicians that assessed caregiver interest in, barriers to, and awareness of various treatment services available in the outpatient clinic. Demographic information was also gathered via the questionnaire.

Results:  Demographic information indicated that the majority of children with ASD were male (M=26, F=2). The average age of the child with ASD was 7 (age range 2-15 years). While the majority of caregivers reported an interest in receiving behavior management treatment services (64.29%) and participation in social skills groups (60.71%), nearly half of the caregivers (46.43%) also expressed interest in additional written materials about ASD (see Table 1). Regarding barriers to services offered, time of day, childcare, and concern services will not meet the needs of the child were of similar difficulty (21-28%) for caregivers (see Table 1). Regarding awareness of services offered, the majority of caregivers reported being aware of the following services: Behavior Management (82.1%) and Evaluations (78.5%). However, less than half of the caregivers reported an awareness of the following services offered: parent training, parent support, medication management, cognitive behavior therapy (CBT), and speech services.

Conclusions: The preliminary results of this study suggest that there are cost-effective ways, such as providing increased written materials and education by the outpatient provider, to assist families with accessing desired services and stresses the importance of increasing caregiver awareness of available services. These results will guide program development to ensure that written materials and visibility of services offered are prioritized by the outpatient clinic to meet the needs of caregivers.