Treatment Adherence in Families of Children Diagnosed with Autism Spectrum Disorders

Background: Parents of children with autism spectrum disorders (ASDs) are commonly called to implement and maintain an array of complex behavioral interventions and medication regimens to manage their child’s condition. Autism intervention research indicates that parent implementation is a critical component to achieving positive outcomes from both medical (Arnold et al., 2010) and behavioral interventions (Levy et al., 2006). A limited number of studies have examined parents’ implementation of prescribed treatments within the context of specific training conditions (Crockett et al., 2007). However, little is known about a) the extent to which parents adhere to treatment recommendations on a day to day basis in the absence of clinician or provider supervision, or b) what child, parent, family, and provider factors may influence treatment adherence for families of children with ASDs. One study with this population indicated greater adherence to medical treatment than behavioral treatment recommendations, and greater adherence to reinforcement-based recommendations than punishment-based recommendations (Moore & Symons, 2009). The current study will extend these findings by considering the influence of a broader set of variables linked to treatment adherence in the medical literature, including parent and relationship factors, child characteristics, and select contextual factors.

Objectives: Aim 1 is to determine patterns of treatment adherence among the parents of children with ASD. Aim 2 is to examine the social context of treatment adherence among parents of children with ASD. Aim 3 is to elicit parents’ perceptions of their treatment services and how systems of care can be improved.

Methods: This study uses mail and online questionnaires to survey parents of children with ASD who are currently receiving ASD-related treatments. The questionnaire includes measures of parent stress, parent sense of competence, depression, coparenting, family management, social support, child diagnosis and symptom severity, and demographic characteristics. In addition, treatment adherence is measured within four treatment categories: Behavioral, medical, developmental, and alternative treatments. Respondent are recruited from treatment providers, support groups, and the SC Department of Disabilities and Special Needs.

Results: Data collection is currently underway and is scheduled to end in early March, 2012. In order to address Aim 1, descriptive statistics  will be computed for all adherence measures. We will compare rates of specific adherence behaviors across treatment categories to determine if parents are more likely to adhere to certain types of treatments more than others. In order to address Aim 2, multiple regression analyses will be used to determine the degree to which parent, child and relationship variables predict parent treatment adherence by treatment type. Aim 3 will be addressed by compiling all qualitative responses in NVivo 8 software and conducting thematic analyses within and across questions.

Conclusions: Understanding the rates of treatment adherence and the factors that predict adherence will inform efforts to create family-centered models of care for individuals with ASDs. In addition, the results gained as part of this project will assist intervention providers in working with families to mitigate the barriers to treatment adherence, which will increase the likelihood of treatment success.