Evidence map›Paper›PMID 38028582›Full record

ArticleAutism & developmental language impairments

'It's really important to be collaborating': Experiences of participatory research for Chinese and Vietnamese parents of autistic children.

Jodie Smith, Aspasia Stacey Rabba, Poulomee Datta, Emma Dresens, Rena Wang, Lin Cong, Ngoc Dang, Gabrielle Hall, Melanie Heyworth, Wenn Lawson and 8 more

Open access · goldAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Autism & developmental language impairments. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed
0.9field-weighted citation impact, top 23% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

3 citing papers in PubMed, 3 citations in OpenAlex.

  1. Article
  2. Autism in Viet Nam: A systematic scoping review.Autism : the international journal of research and practice · 2026
    Article
  3. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

18 authors at 4 institutions in 2 countries.

Jodie SmithMacquarie School of Education, Macquarie University, Sydney, Australia; School of Allied Health, Human Services and Sport, La Trobe University, Melbourne, Australia; Department of Psychology, Counselling and Therapy, School of Psychology and Public Health, La Trobe University, Melbourne, Australia.ORCID https://orcid.org/0000-0003-3528-0658
Aspasia Stacey RabbaMacquarie School of Education, Macquarie University, Sydney, Australia; Department of Psychology, Counselling and Therapy, School of Psychology and Public Health, La Trobe University, Melbourne, Australia; Faculty of Education, School of Educational Psychology and Counselling, Monash University, Melbourne, Australia.
Poulomee DattaMacquarie School of Education, Macquarie University, Sydney, Australia.
Emma DresensPositive Partnerships, Chatswood, NSW, Australia.
Rena WangMacquarie School of Education, Macquarie University, Sydney, Australia; Department of Psychology, Counselling and Therapy, School of Psychology and Public Health, La Trobe University, Melbourne, Australia.
Lin CongMacquarie School of Education, Macquarie University, Sydney, Australia.
Ngoc DangMacquarie School of Education, Macquarie University, Sydney, Australia.
Gabrielle HallMacquarie School of Education, Macquarie University, Sydney, Australia.
Melanie HeyworthMacquarie School of Education, Macquarie University, Sydney, Australia; Reframing Autism, Sydney, Australia.ORCID https://orcid.org/0000-0002-9684-3322
Wenn LawsonMacquarie School of Education, Macquarie University, Sydney, Australia.
Patricia LeeDepartment of Psychology, Counselling and Therapy, School of Psychology and Public Health, La Trobe University, Melbourne, Australia; Positive Partnerships, Forestville, NSW, Australia.
Rozanna LilleyMacquarie School of Education, Macquarie University, Sydney, Australia.ORCID https://orcid.org/0000-0001-6143-8805
Emily MaMacquarie School of Education, Macquarie University, Sydney, Australia; Department of Psychology, Counselling and Therapy, School of Psychology and Public Health, La Trobe University, Melbourne, Australia.
Hau T T NguyenMacquarie School of Education, Macquarie University, Sydney, Australia.
Kim-Van NguyenMacquarie School of Education, Macquarie University, Sydney, Australia.
Phuc NguyenMacquarie School of Education, Macquarie University, Sydney, Australia.
Chong Tze YeowMacquarie School of Education, Macquarie University, Sydney, Australia.
Elizabeth PellicanoMacquarie School of Education, Macquarie University, Sydney, Australia; Department of Clinical, Educational and Health Psychology, University College London, London, UK.
Macquarie University · AULa Trobe University · AUAutism CRC · AUUniversity College London · GB

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

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 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.

Indexed as

autismcommunity participationcultural and linguistic diversityimpactParticipatory research

Identifiers

PMID38028582
PMCPMC10644728
OpenAlexW4388669299

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.