Parents' and Professionals' Perspectives on Autism Services in Alberta

Background: For families, a child with autism may necessitate supports and services on a daily basis and across the lifespan. Families provide the majority of care for young persons with autism, yet there is a dearth of research addressing the supports and services that families with children with autism require to foster best outcomes across the lifespan. Furthermore, limited research has investigated perspectives of family-centered care, considered best practice in child health care, from multiple stakeholders including both parents and professionals. Perspectives from multiple stakeholders will help tailor services to best meet families’ needs.

Objectives: This study will: (1) determine current fit between services received and family values across service sectors [i.e., health, education, social (home/community)], and (2) identify perceived strengths and gaps of current systems of care from the perspectives of both families and professionals.

Methods: 135 surveys from parents and 160 surveys from professionals are completed to date. Parent perceptions of family-centered care were measured with the Measure of Processes of Care (MPOC) completed separately for each sector from which the family receives care. Professionals reported on the implementation of family-centered care using the Measure of Processes of Care – Service Providers (MPOC-SP). Detailed demographics were collected to describe the sample. Open-ended questions addressed perceptions of strengths, gaps, and ways to improve current systems of care for persons with autism and their families. Descriptive statistics will summarize data, and we will examine potential covariates (e.g., age of child, geographic location, type of professional). In addition, we will examine parents’ perception of receiving and professionals’ perceptions of providing family-centered care based on service sector. Responses to open-ended questions will be content analyzed to identify strengths, weaknesses, consistencies and discrepancies among respondent groups. 

Results: Data collection is underway. 

Conclusions: Findings from this study will identify critical strengths and limitations of current systems of care from the perspectives of those directly involved in care: parents and professionals.  It will also identify salient child, family and environmental factors that impact experiences with and perspectives of current systems of care, providing the opportunity to guide supports and services to improve child and family experiences and outcomes.