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‘It's really important to be collaborating’: Experiences of participatory research for Chinese and Vietnamese parents of autistic children
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...
Autores principales: | , , , , , , , , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
SAGE Publications
2023
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10644728/ https://www.ncbi.nlm.nih.gov/pubmed/38028582 http://dx.doi.org/10.1177/23969415231210482 |
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author | Smith, Jodie Rabba, Aspasia Stacey Datta, Poulomee Dresens, Emma Wang, Rena Cong, Lin Dang, Ngoc Hall, Gabrielle Heyworth, Melanie Lawson, Wenn Lee, Patricia Lilley, Rozanna Ma, Emily Nguyen, Hau T T Nguyen, Kim-Van Nguyen, Phuc Yeow, Chong Tze Pellicano, Elizabeth |
author_facet | Smith, Jodie Rabba, Aspasia Stacey Datta, Poulomee Dresens, Emma Wang, Rena Cong, Lin Dang, Ngoc Hall, Gabrielle Heyworth, Melanie Lawson, Wenn Lee, Patricia Lilley, Rozanna Ma, Emily Nguyen, Hau T T Nguyen, Kim-Van Nguyen, Phuc Yeow, Chong Tze Pellicano, Elizabeth |
author_sort | Smith, Jodie |
collection | PubMed |
description | 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. |
format | Online Article Text |
id | pubmed-10644728 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2023 |
publisher | SAGE Publications |
record_format | MEDLINE/PubMed |
spelling | pubmed-106447282023-11-13 ‘It's really important to be collaborating’: Experiences of participatory research for Chinese and Vietnamese parents of autistic children Smith, Jodie Rabba, Aspasia Stacey Datta, Poulomee Dresens, Emma Wang, Rena Cong, Lin Dang, Ngoc Hall, Gabrielle Heyworth, Melanie Lawson, Wenn Lee, Patricia Lilley, Rozanna Ma, Emily Nguyen, Hau T T Nguyen, Kim-Van Nguyen, Phuc Yeow, Chong Tze Pellicano, Elizabeth Autism Dev Lang Impair Research Article 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. SAGE Publications 2023-11-13 /pmc/articles/PMC10644728/ /pubmed/38028582 http://dx.doi.org/10.1177/23969415231210482 Text en © The Author(s) 2023 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 page (https://us.sagepub.com/en-us/nam/open-access-at-sage). |
spellingShingle | Research Article Smith, Jodie Rabba, Aspasia Stacey Datta, Poulomee Dresens, Emma Wang, Rena Cong, Lin Dang, Ngoc Hall, Gabrielle Heyworth, Melanie Lawson, Wenn Lee, Patricia Lilley, Rozanna Ma, Emily Nguyen, Hau T T Nguyen, Kim-Van Nguyen, Phuc Yeow, Chong Tze Pellicano, Elizabeth ‘It's really important to be collaborating’: Experiences of participatory research for Chinese and Vietnamese parents of autistic children |
title | ‘It's really important to be collaborating’: Experiences of participatory research
for Chinese and Vietnamese parents of autistic children |
title_full | ‘It's really important to be collaborating’: Experiences of participatory research
for Chinese and Vietnamese parents of autistic children |
title_fullStr | ‘It's really important to be collaborating’: Experiences of participatory research
for Chinese and Vietnamese parents of autistic children |
title_full_unstemmed | ‘It's really important to be collaborating’: Experiences of participatory research
for Chinese and Vietnamese parents of autistic children |
title_short | ‘It's really important to be collaborating’: Experiences of participatory research
for Chinese and Vietnamese parents of autistic children |
title_sort | ‘it's really important to be collaborating’: experiences of participatory research
for chinese and vietnamese parents of autistic children |
topic | Research Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10644728/ https://www.ncbi.nlm.nih.gov/pubmed/38028582 http://dx.doi.org/10.1177/23969415231210482 |
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