‘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 i...
| Main Authors: | , , , , , , , , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
| Published: |
SAGE Publishing
2023-11-01
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| Series: | Autism and Developmental Language Impairments |
| Online Access: | https://doi.org/10.1177/23969415231210482 |
| _version_ | 1797326888767586304 |
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| author | Jodie Smith Aspasia Stacey Rabba Poulomee Datta Emma Dresens Rena Wang Lin Cong Ngoc Dang Gabrielle Hall Melanie Heyworth Wenn Lawson Patricia Lee Rozanna Lilley Emily Ma Hau T T Nguyen Kim-Van Nguyen Phuc Nguyen Chong Tze Yeow Elizabeth Pellicano |
| author_facet | Jodie Smith Aspasia Stacey Rabba Poulomee Datta Emma Dresens Rena Wang Lin Cong Ngoc Dang Gabrielle Hall Melanie Heyworth Wenn Lawson Patricia Lee Rozanna Lilley Emily Ma Hau T T Nguyen Kim-Van Nguyen Phuc Nguyen Chong Tze Yeow Elizabeth Pellicano |
| author_sort | Jodie Smith |
| collection | DOAJ |
| 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. |
| first_indexed | 2024-03-08T06:30:42Z |
| format | Article |
| id | doaj.art-be96c7b3867042c98822756db299054f |
| institution | Directory Open Access Journal |
| issn | 2396-9415 |
| language | English |
| last_indexed | 2024-03-08T06:30:42Z |
| publishDate | 2023-11-01 |
| publisher | SAGE Publishing |
| record_format | Article |
| series | Autism and Developmental Language Impairments |
| spelling | doaj.art-be96c7b3867042c98822756db299054f2024-02-03T11:56:28ZengSAGE PublishingAutism and Developmental Language Impairments2396-94152023-11-01810.1177/23969415231210482‘It's really important to be collaborating’: Experiences of participatory research for Chinese and Vietnamese parents of autistic childrenJodie SmithAspasia Stacey RabbaPoulomee DattaEmma DresensRena WangLin CongNgoc DangGabrielle HallMelanie HeyworthWenn LawsonPatricia LeeRozanna LilleyEmily MaHau T T NguyenKim-Van NguyenPhuc NguyenChong Tze YeowElizabeth PellicanoBackground 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.https://doi.org/10.1177/23969415231210482 |
| spellingShingle | Jodie Smith Aspasia Stacey Rabba Poulomee Datta Emma Dresens Rena Wang Lin Cong Ngoc Dang Gabrielle Hall Melanie Heyworth Wenn Lawson Patricia Lee Rozanna Lilley Emily Ma Hau T T Nguyen Kim-Van Nguyen Phuc Nguyen Chong Tze Yeow Elizabeth Pellicano ‘It's really important to be collaborating’: Experiences of participatory research for Chinese and Vietnamese parents of autistic children Autism and Developmental Language Impairments |
| 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 |
| url | https://doi.org/10.1177/23969415231210482 |
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