Parents' and professionals' perceptions of family-centered care for children with autism spectrum disorder across service sectors

Sandra Hodgetts, David Nicholas, Lonnie Zwaigenbaum and David McConnell

Social Science & Medicine, 2013, vol. 96, issue C, 138-146

Abstract: Family-centered care (FCC) has been linked with improved parent and child outcomes, yet its implementation can be challenging due to family, professional, organizational and systemic factors and policies. 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 professionals working with persons with ASD completed the Measure of Processes of Care – Service Providers. 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.

Keywords: Autism; Family-centered care; Services; Lifespan; Access; Canada (search for similar items in EconPapers)
Date: 2013
References: View references in EconPapers View complete reference list from CitEc
Citations: View citations in EconPapers (1)

Downloads: (external link)
http://www.sciencedirect.com/science/article/pii/S0277953613004115
Full text for ScienceDirect subscribers only

Related works:
This item may be available elsewhere in EconPapers: Search for items with the same title.

Export reference: BibTeX RIS (EndNote, ProCite, RefMan) HTML/Text

Persistent link: https://EconPapers.repec.org/RePEc:eee:socmed:v:96:y:2013:i:c:p:138-146

Ordering information: This journal article can be ordered from
http://www.elsevier.com/wps/find/supportfaq.cws_home/regional
http://www.elsevier. ... _01_ooc_1&version=01

DOI: 10.1016/j.socscimed.2013.07.012

Access Statistics for this article

Social Science & Medicine is currently edited by Ichiro (I.) Kawachi and S.V. (S.V.) Subramanian

More articles in Social Science & Medicine from Elsevier
Bibliographic data for series maintained by Catherine Liu ().