Parents’ and professionals’ perceptions of family-centered care for children with autism spectrum disorder across service sectors Sandra Hodgetts a, * , David Nicholas b , Lonnie Zwaigenbaum c , David McConnell a a Department of Occupational Therapy, University of Alberta, 2-64 Corbett Hall, Edmonton, Alberta, Canada T6G 2G4 b Faculty of Social Work, University of Calgary e Edmonton Region, Edmonton, Canada c Department of Pediatrics, University of Alberta, Edmonton, Canada article info Article history: Available online 25 July 2013 Keywords: Autism Family-centered care Services Lifespan Access Canada abstract Family-centered care (FCC) has been linked with improved parent and child outcomes, yet its imple- mentation can be challenging due to family, professional, organizational and systemic factors and pol- icies. This study aims to increase knowledge and understanding of how families with children with autism spectrum disorder (ASD) experience FCC in Alberta, Canada. 152 parents with a child with ASD completed the Measure of Processes of Care, separately for each utilized service sector, and 146 pro- fessionals working with persons with ASD completed the Measure of Processes of Care e Service Pro- viders. Additionally, in-depth interviews were conducted with a sub-sample of 19 parents, purposefully sampled for diversity in child and family characteristics. Data were collected in 2011. Descriptive and inferential statistics were used to analyze quantitative data. Interview transcripts were analyzed using grounded theory constant comparison methods, yielding a data generated theoretical model depicting families’ experiences with FCC over time and across service sectors. There were no statistically significant differences in FCC scores across service sectors, but statistically significant differences in FCC scores between parents’ and professionals’ were found. Qualitative data revealed positive experiences and perceptions of receiving FCC from professionals “on the ground” across sectors, but negative experiences and perceptions of FCC at the systems level (i.e., administration, funders). These broad experiences emerged as a core theme “System of Exclusion”, which integrated the key themes: (1) “The Fight”, (2) “Roles and Restrictions of Care”, and (3) “Therapeutic Rapport”. Professionals and service providers can use findings to ensure that services reflect current conceptualizations of FCC, and decision and policy makers can use findings to recognize systemic barriers to implementing FCC and inform policy change. Ó 2013 Elsevier Ltd. All rights reserved. Introduction Autism Spectrum Disorder (ASD) presents a wide range of manifestations and symptoms, with clinical diagnoses determined based on behavioral criteria including impaired social interaction and communication skills, and restrictive and stereotyped behav- iors (e.g., preoccupation, rigidities). Co-morbidities include aggression, impulsivity, anxiety, depression, selective feeding, sleep disturbances, sensory sensitivities, seizures, and cognitive delay (American Psychiatric Association, 1994). Thus, the need for re- sources, supports and services for persons with ASD and their families often occurs daily and across the lifespan, and can vary considerably between persons with ASD, and over time (Mulligan, Steel, MacCulloch & Nicholas, 2010). Given the pervasive impact that a diagnosis of ASD can have on the daily lives of persons with ASD and their families, treatment and supports for people with ASD should address the needs of the entire family. Family-centered care (FCC) is a broadly defined practice philosophy in which parents and service providers work in partnership, and supports and services coincide with changing needs and priorities of the family. Families are given choice and control over treatment decisions, based on the premise that fam- ilies are the constant in the child’s life and are best suited to determine their child’s needs (Woodside, Rosenbaum, King & King, 2001). FCC has been linked with increased parent satisfaction, decreased parent stress, and improved child outcomes (King, King & Rosenbaum, 2004; Woodside et al., 2001). However, discon- nects exist between the values and principles that are supported in theory and the realities of everyday practice (Kilmer, Cook & * Corresponding author. E-mail address: sandra.hodgetts@ualberta.ca (S. Hodgetts). Contents lists available at ScienceDirect Social Science & Medicine journal homepage: www.elsevier.com/locate/socscimed 0277-9536/$ e see front matter Ó 2013 Elsevier Ltd. All rights reserved. http://dx.doi.org/10.1016/j.socscimed.2013.07.012 Social Science & Medicine 96 (2013) 138e146