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“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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Autores principales: Smith-Young, Joanne, Chafe, Roger, Audas, Rick, Gustafson, Diana L
Formato: Online Artículo Texto
Lenguaje:English
Publicado: SAGE Publications 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8883377/
https://www.ncbi.nlm.nih.gov/pubmed/35237049
http://dx.doi.org/10.1177/11786329221078803
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author Smith-Young, Joanne
Chafe, Roger
Audas, Rick
Gustafson, Diana L
author_facet Smith-Young, Joanne
Chafe, Roger
Audas, Rick
Gustafson, Diana L
author_sort Smith-Young, Joanne
collection PubMed
description 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.
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spelling pubmed-88833772022-03-01 “I Know How to Advocate”: Parents’ Experiences in Advocating for Children and Youth Diagnosed With Autism Spectrum Disorder Smith-Young, Joanne Chafe, Roger Audas, Rick Gustafson, Diana L Health Serv Insights Original Research 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. SAGE Publications 2022-02-24 /pmc/articles/PMC8883377/ /pubmed/35237049 http://dx.doi.org/10.1177/11786329221078803 Text en © The Author(s) 2022 https://creativecommons.org/licenses/by/4.0/This article is distributed under the terms of the Creative Commons Attribution 4.0 License (https://creativecommons.org/licenses/by/4.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage).
spellingShingle Original Research
Smith-Young, Joanne
Chafe, Roger
Audas, Rick
Gustafson, Diana L
“I Know How to Advocate”: Parents’ Experiences in Advocating for Children and Youth Diagnosed With Autism Spectrum Disorder
title “I Know How to Advocate”: Parents’ Experiences in Advocating for Children and Youth Diagnosed With Autism Spectrum Disorder
title_full “I Know How to Advocate”: Parents’ Experiences in Advocating for Children and Youth Diagnosed With Autism Spectrum Disorder
title_fullStr “I Know How to Advocate”: Parents’ Experiences in Advocating for Children and Youth Diagnosed With Autism Spectrum Disorder
title_full_unstemmed “I Know How to Advocate”: Parents’ Experiences in Advocating for Children and Youth Diagnosed With Autism Spectrum Disorder
title_short “I Know How to Advocate”: Parents’ Experiences in Advocating for Children and Youth Diagnosed With Autism Spectrum Disorder
title_sort “i know how to advocate”: parents’ experiences in advocating for children and youth diagnosed with autism spectrum disorder
topic Original Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8883377/
https://www.ncbi.nlm.nih.gov/pubmed/35237049
http://dx.doi.org/10.1177/11786329221078803
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