View in EDS

'It's Really Important to Be Collaborating': Experiences of Participatory Research for Chinese and Vietnamese Parents of Autistic Children

Saved in:
Bibliographic Details
Title: 'It's Really Important to Be Collaborating': Experiences of Participatory Research for Chinese and Vietnamese Parents of Autistic Children
Language: English
Authors: Jodie Smith (ORCID 0000-0003-3528-0658), Aspasia Stacey Rabba, Poulomee Datta, Emma Dresens, Rena Wang, Lin Cong, Ngoc Dang, Gabrielle Hall, Melanie Heyworth (ORCID 0000-0002-9684-3322), Wenn Lawson, Patricia Lee, Rozanna Lilley (ORCID 0000-0001-6143-8805), Emily Ma, Hau T. T. Nguyen, Kim-Van Nguyen, Phuc Nguyen, Chong Tze Yeow, Elizabeth Pellicano
Source: Autism & Developmental Language Impairments. 2023 8.
Availability: SAGE Publications. 2455 Teller Road, Thousand Oaks, CA 91320. Tel: 800-818-7243; Tel: 805-499-9774; Fax: 800-583-2665; e-mail: journals@sagepub.com; Web site: https://sagepub.com
Peer Reviewed: Y
Page Count: 13
Publication Date: 2023
Document Type: Journal Articles
Reports - Research
Descriptors: Autism Spectrum Disorders, Parents, Parent Attitudes, Children, Foreign Countries, Family School Relationship, Family Involvement, Ethnic Groups, Community Involvement, Cultural Background, Intercultural Programs, Diversity
Geographic Terms: Australia
DOI: 10.1177/23969415231210482
ISSN: 2396-9415
Abstract: Background and aims: Participatory research involves academic partners working together with the community that is affected by research to make decisions about that research. Such approaches often result in research that is more respectful of, and responsive to, community preferences -- and is vital in the context of autism research with culturally and linguistically diverse (CALD) communities. Whilst participatory approaches are becoming more commonplace within CALD autism research, no studies have explored the experiences of being involved in autism research from the perspectives of CALD community partners over the course of a study. This paper intended to address this gap by reporting on the experiences of CALD parents of autistic children who were community partners in a 1-year Australian research project exploring home-school partnerships for CALD parents of autistic children. We aimed to: (1) report on how parents' involvement in the research process shaped the home-school partnerships study over time and (2) understand their experiences of being community partners on the home-school partnerships project. Methods: Using key principles of participatory approaches, we established Chinese and Vietnamese parent advisory groups to contribute to a project exploring home-school partnerships for parents of autistic children from CALD backgrounds in Australia. Advisory groups included parents of autistic children from Chinese/Vietnamese backgrounds, as well as interpreters, professionals and researchers. We documented how parents' participation as community partners shaped the home-school partnerships study over the course of the project. We also elicited parents' own views and experiences of being community partners through informal, open-ended questions at the beginning and end of the study. Results: We found that parents' input fundamentally shaped the broader home-school partnership study, from meaningful, accurate translation of interview schedules through to making decisions regarding community-specific recommendations and dissemination plans. Parents themselves reported being keen to collaborate and to hear and share opinions for the purpose of the home-school partnership study -- although they noted how emotionally difficult sharing their stories could be. While they initially had some concerns about combining being involved as a community partner with their existing responsibilities, ultimately, parents were surprised by the scope of the home-school partnership study and their level of involvement as community partners. Through hearing others' stories and sharing their own in advisory group meetings, parents reported ancillary benefits of their involvement, including increased self-advocacy and well-being. Conclusions: These findings show how research that is conducted in partnership "with" diverse members of the autism community has the capacity to improve the quality of the research and benefit community partners. Implications: This study clearly documents the benefits and potential challenges of participatory approaches with CALD communities. These findings emphasise to researchers and funders the importance of including extra time and money within budgets in order to produce meaningful research that is respectful and responsive to communities.
Abstractor: As Provided
Entry Date: 2024
Accession Number: EJ1410694
Database: ERIC
FullText Text:
  Availability: 0
Header DbId: eric
DbLabel: ERIC
An: EJ1410694
AccessLevel: 3
PubType: Academic Journal
PubTypeId: academicJournal
PreciseRelevancyScore: 0
IllustrationInfo
Items – Name: Title
  Label: Title
  Group: Ti
  Data: 'It's Really Important to Be Collaborating': Experiences of Participatory Research for Chinese and Vietnamese Parents of Autistic Children
– Name: Language
  Label: Language
  Group: Lang
  Data: English
– Name: Author
  Label: Authors
  Group: Au
  Data: <searchLink fieldCode="AR" term="%22Jodie+Smith%22">Jodie Smith</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0003-3528-0658">0000-0003-3528-0658</externalLink>)<br /><searchLink fieldCode="AR" term="%22Aspasia+Stacey+Rabba%22">Aspasia Stacey Rabba</searchLink><br /><searchLink fieldCode="AR" term="%22Poulomee+Datta%22">Poulomee Datta</searchLink><br /><searchLink fieldCode="AR" term="%22Emma+Dresens%22">Emma Dresens</searchLink><br /><searchLink fieldCode="AR" term="%22Rena+Wang%22">Rena Wang</searchLink><br /><searchLink fieldCode="AR" term="%22Lin+Cong%22">Lin Cong</searchLink><br /><searchLink fieldCode="AR" term="%22Ngoc+Dang%22">Ngoc Dang</searchLink><br /><searchLink fieldCode="AR" term="%22Gabrielle+Hall%22">Gabrielle Hall</searchLink><br /><searchLink fieldCode="AR" term="%22Melanie+Heyworth%22">Melanie Heyworth</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0002-9684-3322">0000-0002-9684-3322</externalLink>)<br /><searchLink fieldCode="AR" term="%22Wenn+Lawson%22">Wenn Lawson</searchLink><br /><searchLink fieldCode="AR" term="%22Patricia+Lee%22">Patricia Lee</searchLink><br /><searchLink fieldCode="AR" term="%22Rozanna+Lilley%22">Rozanna Lilley</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0001-6143-8805">0000-0001-6143-8805</externalLink>)<br /><searchLink fieldCode="AR" term="%22Emily+Ma%22">Emily Ma</searchLink><br /><searchLink fieldCode="AR" term="%22Hau+T%2E+T%2E+Nguyen%22">Hau T. T. Nguyen</searchLink><br /><searchLink fieldCode="AR" term="%22Kim-Van+Nguyen%22">Kim-Van Nguyen</searchLink><br /><searchLink fieldCode="AR" term="%22Phuc+Nguyen%22">Phuc Nguyen</searchLink><br /><searchLink fieldCode="AR" term="%22Chong+Tze+Yeow%22">Chong Tze Yeow</searchLink><br /><searchLink fieldCode="AR" term="%22Elizabeth+Pellicano%22">Elizabeth Pellicano</searchLink>
– Name: TitleSource
  Label: Source
  Group: Src
  Data: <searchLink fieldCode="SO" term="%22Autism+%26+Developmental+Language+Impairments%22"><i>Autism & Developmental Language Impairments</i></searchLink>. 2023 8.
– Name: Avail
  Label: Availability
  Group: Avail
  Data: SAGE Publications. 2455 Teller Road, Thousand Oaks, CA 91320. Tel: 800-818-7243; Tel: 805-499-9774; Fax: 800-583-2665; e-mail: journals@sagepub.com; Web site: https://sagepub.com
– Name: PeerReviewed
  Label: Peer Reviewed
  Group: SrcInfo
  Data: Y
– Name: Pages
  Label: Page Count
  Group: Src
  Data: 13
– Name: DatePubCY
  Label: Publication Date
  Group: Date
  Data: 2023
– Name: TypeDocument
  Label: Document Type
  Group: TypDoc
  Data: Journal Articles<br />Reports - Research
– Name: Subject
  Label: Descriptors
  Group: Su
  Data: <searchLink fieldCode="DE" term="%22Autism+Spectrum+Disorders%22">Autism Spectrum Disorders</searchLink><br /><searchLink fieldCode="DE" term="%22Parents%22">Parents</searchLink><br /><searchLink fieldCode="DE" term="%22Parent+Attitudes%22">Parent Attitudes</searchLink><br /><searchLink fieldCode="DE" term="%22Children%22">Children</searchLink><br /><searchLink fieldCode="DE" term="%22Foreign+Countries%22">Foreign Countries</searchLink><br /><searchLink fieldCode="DE" term="%22Family+School+Relationship%22">Family School Relationship</searchLink><br /><searchLink fieldCode="DE" term="%22Family+Involvement%22">Family Involvement</searchLink><br /><searchLink fieldCode="DE" term="%22Ethnic+Groups%22">Ethnic Groups</searchLink><br /><searchLink fieldCode="DE" term="%22Community+Involvement%22">Community Involvement</searchLink><br /><searchLink fieldCode="DE" term="%22Cultural+Background%22">Cultural Background</searchLink><br /><searchLink fieldCode="DE" term="%22Intercultural+Programs%22">Intercultural Programs</searchLink><br /><searchLink fieldCode="DE" term="%22Diversity%22">Diversity</searchLink>
– Name: Subject
  Label: Geographic Terms
  Group: Su
  Data: <searchLink fieldCode="DE" term="%22Australia%22">Australia</searchLink>
– Name: DOI
  Label: DOI
  Group: ID
  Data: 10.1177/23969415231210482
– Name: ISSN
  Label: ISSN
  Group: ISSN
  Data: 2396-9415
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: Background and aims: Participatory research involves academic partners working together with the community that is affected by research to make decisions about that research. Such approaches often result in research that is more respectful of, and responsive to, community preferences -- and is vital in the context of autism research with culturally and linguistically diverse (CALD) communities. Whilst participatory approaches are becoming more commonplace within CALD autism research, no studies have explored the experiences of being involved in autism research from the perspectives of CALD community partners over the course of a study. This paper intended to address this gap by reporting on the experiences of CALD parents of autistic children who were community partners in a 1-year Australian research project exploring home-school partnerships for CALD parents of autistic children. We aimed to: (1) report on how parents' involvement in the research process shaped the home-school partnerships study over time and (2) understand their experiences of being community partners on the home-school partnerships project. Methods: Using key principles of participatory approaches, we established Chinese and Vietnamese parent advisory groups to contribute to a project exploring home-school partnerships for parents of autistic children from CALD backgrounds in Australia. Advisory groups included parents of autistic children from Chinese/Vietnamese backgrounds, as well as interpreters, professionals and researchers. We documented how parents' participation as community partners shaped the home-school partnerships study over the course of the project. We also elicited parents' own views and experiences of being community partners through informal, open-ended questions at the beginning and end of the study. Results: We found that parents' input fundamentally shaped the broader home-school partnership study, from meaningful, accurate translation of interview schedules through to making decisions regarding community-specific recommendations and dissemination plans. Parents themselves reported being keen to collaborate and to hear and share opinions for the purpose of the home-school partnership study -- although they noted how emotionally difficult sharing their stories could be. While they initially had some concerns about combining being involved as a community partner with their existing responsibilities, ultimately, parents were surprised by the scope of the home-school partnership study and their level of involvement as community partners. Through hearing others' stories and sharing their own in advisory group meetings, parents reported ancillary benefits of their involvement, including increased self-advocacy and well-being. Conclusions: These findings show how research that is conducted in partnership "with" diverse members of the autism community has the capacity to improve the quality of the research and benefit community partners. Implications: This study clearly documents the benefits and potential challenges of participatory approaches with CALD communities. These findings emphasise to researchers and funders the importance of including extra time and money within budgets in order to produce meaningful research that is respectful and responsive to communities.
– Name: AbstractInfo
  Label: Abstractor
  Group: Ab
  Data: As Provided
– Name: DateEntry
  Label: Entry Date
  Group: Date
  Data: 2024
– Name: AN
  Label: Accession Number
  Group: ID
  Data: EJ1410694
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=eric&AN=EJ1410694
RecordInfo BibRecord:
  BibEntity:
    Identifiers:
      – Type: doi
        Value: 10.1177/23969415231210482
    Languages:
      – Text: English
    PhysicalDescription:
      Pagination:
        PageCount: 13
    Subjects:
      – SubjectFull: Autism Spectrum Disorders
        Type: general
      – SubjectFull: Parents
        Type: general
      – SubjectFull: Parent Attitudes
        Type: general
      – SubjectFull: Children
        Type: general
      – SubjectFull: Foreign Countries
        Type: general
      – SubjectFull: Family School Relationship
        Type: general
      – SubjectFull: Family Involvement
        Type: general
      – SubjectFull: Ethnic Groups
        Type: general
      – SubjectFull: Community Involvement
        Type: general
      – SubjectFull: Cultural Background
        Type: general
      – SubjectFull: Intercultural Programs
        Type: general
      – SubjectFull: Diversity
        Type: general
      – SubjectFull: Australia
        Type: general
    Titles:
      – TitleFull: 'It's Really Important to Be Collaborating': Experiences of Participatory Research for Chinese and Vietnamese Parents of Autistic Children
        Type: main
  BibRelationships:
    HasContributorRelationships:
      – PersonEntity:
          Name:
            NameFull: Jodie Smith
      – PersonEntity:
          Name:
            NameFull: Aspasia Stacey Rabba
      – PersonEntity:
          Name:
            NameFull: Poulomee Datta
      – PersonEntity:
          Name:
            NameFull: Emma Dresens
      – PersonEntity:
          Name:
            NameFull: Rena Wang
      – PersonEntity:
          Name:
            NameFull: Lin Cong
      – PersonEntity:
          Name:
            NameFull: Ngoc Dang
      – PersonEntity:
          Name:
            NameFull: Gabrielle Hall
      – PersonEntity:
          Name:
            NameFull: Melanie Heyworth
      – PersonEntity:
          Name:
            NameFull: Wenn Lawson
      – PersonEntity:
          Name:
            NameFull: Patricia Lee
      – PersonEntity:
          Name:
            NameFull: Rozanna Lilley
      – PersonEntity:
          Name:
            NameFull: Emily Ma
      – PersonEntity:
          Name:
            NameFull: Hau T. T. Nguyen
      – PersonEntity:
          Name:
            NameFull: Kim-Van Nguyen
      – PersonEntity:
          Name:
            NameFull: Phuc Nguyen
      – PersonEntity:
          Name:
            NameFull: Chong Tze Yeow
      – PersonEntity:
          Name:
            NameFull: Elizabeth Pellicano
    IsPartOfRelationships:
      – BibEntity:
          Dates:
            – D: 01
              M: 01
              Type: published
              Y: 2023
          Identifiers:
            – Type: issn-electronic
              Value: 2396-9415
          Numbering:
            – Type: volume
              Value: 8
          Titles:
            – TitleFull: Autism & Developmental Language Impairments
              Type: main
ResultId 1