Your browser doesn't support javascript.
loading
Parents' and professionals' perceptions of family-centered care for children with autism spectrum disorder across service sectors.
Hodgetts, Sandra; Nicholas, David; Zwaigenbaum, Lonnie; McConnell, David.
Afiliación
  • Hodgetts S; Department of Occupational Therapy, University of Alberta, 2-64 Corbett Hall, Edmonton, Alberta, Canada T6G 2G4. Electronic address: sandra.hodgetts@ualberta.ca.
Soc Sci Med ; 96: 138-46, 2013 Nov.
Article en En | MEDLINE | ID: mdl-24034961
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.
Asunto(s)
Palabras clave

Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Padres / Actitud del Personal de Salud / Actitud Frente a la Salud / Familia / Trastornos Generalizados del Desarrollo Infantil / Servicios de Salud del Niño / Atención Dirigida al Paciente Tipo de estudio: Prognostic_studies / Qualitative_research Aspecto: Determinantes_sociais_saude Límite: Adolescent / Child / Child, preschool / Humans Idioma: En Revista: Soc Sci Med Año: 2013 Tipo del documento: Article Pais de publicación: Reino Unido

Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Padres / Actitud del Personal de Salud / Actitud Frente a la Salud / Familia / Trastornos Generalizados del Desarrollo Infantil / Servicios de Salud del Niño / Atención Dirigida al Paciente Tipo de estudio: Prognostic_studies / Qualitative_research Aspecto: Determinantes_sociais_saude Límite: Adolescent / Child / Child, preschool / Humans Idioma: En Revista: Soc Sci Med Año: 2013 Tipo del documento: Article Pais de publicación: Reino Unido