A meta-synthesis of how parents of children with autism describe their experience of advocating for their children during the process of diagnosis

Kobie Boshoff, Deanna Gibbs, Rebecca L. Phillips, Louise Wiles, Lisa Porter

Research output: Contribution to journalReview article

1 Citation (Scopus)

Abstract

The diagnostic process for children with autism can be complex for parents to navigate as they advocate for their child in order to obtain answers to their concerns, and receive the subsequent support they need. Gaining an understanding of parents’ experiences during this process, will assist service providers in supporting families adequately. This systematic review was undertaken to consolidate in-depth qualitative data from parents of their experience of advocating for their child with autism, during the process of diagnosis. A qualitative meta-synthesis was conducted, whereby fifteen databases were systematically searched. Twenty-two studies were identified and appraised using an adapted version of the Critical Appraisal Skills Programme tool. Data were synthesised into themes through the steps of review, meta-aggregation, integration, and interpretation. The date range of the included studies spans 1999–2016. The voices of 1,178 parents are presented in this review describing their experiences in two overarching themes: “Pathway to diagnosis—Confusion and not feeling heard”; and “Pursuing diagnosis—Resilience and commitment.” Each one of these main themes had sub-themes. Our findings highlight the intense emotional journey for parents during identification of their initial concerns and the formal process of diagnosis, and their perceptions of not being supported by others on this journey. This review illustrates the significant impact that positive experiences with first-line professionals have during the process of diagnosis, and how these experiences lay the foundation for all future relationships with other service providers. As a result, awareness of parents’ experiences will assist service providers to reconsider their communication style, information sharing, provision of support and to incorporate parents’ contributions in facilitating a more streamlined and more supportive process of diagnosis.

LanguageEnglish
Pagese143-e157
JournalHealth and Social Care in the Community
Volume27
Issue number4
DOIs
Publication statusPublished - 1 Jul 2019

Keywords

  • advocacy
  • autism
  • diagnosis
  • meta-synthesis
  • parents

ASJC Scopus subject areas

  • Social Sciences (miscellaneous)
  • Sociology and Political Science
  • Health Policy
  • Public Health, Environmental and Occupational Health

Cite this

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title = "A meta-synthesis of how parents of children with autism describe their experience of advocating for their children during the process of diagnosis",
abstract = "The diagnostic process for children with autism can be complex for parents to navigate as they advocate for their child in order to obtain answers to their concerns, and receive the subsequent support they need. Gaining an understanding of parents’ experiences during this process, will assist service providers in supporting families adequately. This systematic review was undertaken to consolidate in-depth qualitative data from parents of their experience of advocating for their child with autism, during the process of diagnosis. A qualitative meta-synthesis was conducted, whereby fifteen databases were systematically searched. Twenty-two studies were identified and appraised using an adapted version of the Critical Appraisal Skills Programme tool. Data were synthesised into themes through the steps of review, meta-aggregation, integration, and interpretation. The date range of the included studies spans 1999–2016. The voices of 1,178 parents are presented in this review describing their experiences in two overarching themes: “Pathway to diagnosis—Confusion and not feeling heard”; and “Pursuing diagnosis—Resilience and commitment.” Each one of these main themes had sub-themes. Our findings highlight the intense emotional journey for parents during identification of their initial concerns and the formal process of diagnosis, and their perceptions of not being supported by others on this journey. This review illustrates the significant impact that positive experiences with first-line professionals have during the process of diagnosis, and how these experiences lay the foundation for all future relationships with other service providers. As a result, awareness of parents’ experiences will assist service providers to reconsider their communication style, information sharing, provision of support and to incorporate parents’ contributions in facilitating a more streamlined and more supportive process of diagnosis.",
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A meta-synthesis of how parents of children with autism describe their experience of advocating for their children during the process of diagnosis. / Boshoff, Kobie; Gibbs, Deanna; Phillips, Rebecca L.; Wiles, Louise; Porter, Lisa.

In: Health and Social Care in the Community, Vol. 27, No. 4, 01.07.2019, p. e143-e157.

Research output: Contribution to journalReview article

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AU - Gibbs, Deanna

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