"I Know How to Advocate": Parents' Experiences in Advocating for Children and Youth Diagnosed With Autism Spectrum Disorder.

Background: Parental advocacy is a dynamic process that changes depending on the circumstances and needs of the child and parent. Communication deficits related to an Autism Spectrum Disorder (ASD) diagnosis often necessitate parental advocacy. This study describes how parents and caregivers of chil...

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Publicado en:Health Services Insights Vol. 15; pp. 1 - 12
Autores principales: Smith-Young, Joanne, Chafe, Roger, Audas, Rick, Gustafson, Diana L
Formato: research tables/charts Journal Article
Publicado: Sage Publications Inc. 2/24/2022
Acceso en línea:Ver este registro en EBSCOhost
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      dt: 2/24/2022
      vid: 15
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      pub: Sage Publications Inc.
      place: Thousand Oaks, California
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        atl: "I Know How to Advocate": Parents' Experiences in Advocating for Children and Youth Diagnosed With Autism Spectrum Disorder.
      aug:
        au:
          Smith-Young, Joanne
          Chafe, Roger
          Audas, Rick
          Gustafson, Diana L
        affil: Division of Clinical Epidemiology, Faculty of Medicine, Memorial University, St. John's, NL, Canada
      sug:
        subj:
          Autism Spectrum Disorder
          Parents of Children with Disabilities
          Caregivers
          Child Advocacy Psychosocial Factors
          Parental Attitudes
          Caregiver Attitudes
          Funding Source
          Canada
          Human
          Descriptive Research
          Exploratory Research
          Qualitative Studies
          Purposive Sample
          Semi-Structured Interview
          Thematic Analysis
          Health Services Accessibility
          Skill Acquisition
      ab: Background: Parental advocacy is a dynamic process that changes depending on the circumstances and needs of the child and parent. Communication deficits related to an Autism Spectrum Disorder (ASD) diagnosis often necessitate parental advocacy. This study describes how parents and caregivers of children and youth diagnosed with ASD engage in parental advocacy, the challenges they encounter and the advocacy skills they develop. Method: We used descriptive exploratory methodology informed by reflexive thematic analysis. The aim of the study was to explore advocacy in parents and caregivers of children and youth diagnosed with ASD. Results: We conducted in-depth, semi-structured interviews with 15 parents of children and youth with an ASD diagnosis living in 4 provinces of Atlantic Canada. The pathway in parents' advocacy journey included: (1) Expressing concerns; (2) Seeking help, assessment, and diagnosis; (3) Acquiring services; (4) Removing barriers; and (5) Developing advocacy skills. Conclusions: Our findings illustrate the process of parental advocacy, skill development, and the barriers parents encounter in advocating for their children with ASD. Future research might explore how health professionals can support parents' advocacy efforts.
      pubtype: Academic Journal
      doctype:
        research
        tables/charts
        Journal Article
      ougenre: Article
    language: English
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