Integrating Community Participation With Interpretative Phenomenological Analysis: Reflections on Engaging the Autism Community

Members of the autistic community have long advocated for more input into and participation with autism-related research. Currently, the power to determine the direction of autism-related research and knowledge production related to autism lies with non-autistic researchers, while the wishes and per...

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Autores principales:	Gabrielle A. Heselton, Gwen R. Rempel, David B. Nicholas
Formato:	article
Lenguaje:	EN
Publicado:	SAGE Publishing 2021
Materias:	Social sciences (General) H1-99
Acceso en línea:	https://doaj.org/article/b700f212fe614555b8767fe866ea8106
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spelling	oai:doaj.org-article:b700f212fe614555b8767fe866ea81062021-11-19T23:04:16ZIntegrating Community Participation With Interpretative Phenomenological Analysis: Reflections on Engaging the Autism Community1609-406910.1177/16094069211055575https://doaj.org/article/b700f212fe614555b8767fe866ea81062021-11-01T00:00:00Zhttps://doi.org/10.1177/16094069211055575https://doaj.org/toc/1609-4069Members of the autistic community have long advocated for more input into and participation with autism-related research. Currently, the power to determine the direction of autism-related research and knowledge production related to autism lies with non-autistic researchers, while the wishes and perspectives of the autistic community are largely ignored. There is a growing trend toward ethical autism-related research, however, in which the perspectives of all stakeholders, particularly those of autistic individuals, are sought and their expertise on autism is foregrounded. In a study exploring the experiences of childhood adversity and resilience among autistic adults, we strove to conduct our research in an inclusive and ethical way, by integrating participatory methods, such as community engagement to inform research design, and credibility checking with participants to confirm that the analysis resonated with their experiences. Five stakeholders, representing parents of children on the autism spectrum, professionals, and autistic community members were recruited to provide input into the research design and provide insight into autistic ways of communicating, interacting, and being. The recommendations generated through this community engagement were then integrated into an interpretative phenomenological analysis (IPA) framework and implemented with four adult autistic participants. Through reflection on the process of community engagement, development of research design, implementation of the study, and credibility checking, it is clear that incorporating participatory methods into IPA increases rigor and ensures that autistic perspectives are represented through research.Gabrielle A. HeseltonGwen R. RempelDavid B. NicholasSAGE PublishingarticleSocial sciences (General)H1-99ENInternational Journal of Qualitative Methods, Vol 20 (2021)
institution	DOAJ
collection	DOAJ
language	EN
topic	Social sciences (General) H1-99
spellingShingle	Social sciences (General) H1-99 Gabrielle A. Heselton Gwen R. Rempel David B. Nicholas Integrating Community Participation With Interpretative Phenomenological Analysis: Reflections on Engaging the Autism Community
description	Members of the autistic community have long advocated for more input into and participation with autism-related research. Currently, the power to determine the direction of autism-related research and knowledge production related to autism lies with non-autistic researchers, while the wishes and perspectives of the autistic community are largely ignored. There is a growing trend toward ethical autism-related research, however, in which the perspectives of all stakeholders, particularly those of autistic individuals, are sought and their expertise on autism is foregrounded. In a study exploring the experiences of childhood adversity and resilience among autistic adults, we strove to conduct our research in an inclusive and ethical way, by integrating participatory methods, such as community engagement to inform research design, and credibility checking with participants to confirm that the analysis resonated with their experiences. Five stakeholders, representing parents of children on the autism spectrum, professionals, and autistic community members were recruited to provide input into the research design and provide insight into autistic ways of communicating, interacting, and being. The recommendations generated through this community engagement were then integrated into an interpretative phenomenological analysis (IPA) framework and implemented with four adult autistic participants. Through reflection on the process of community engagement, development of research design, implementation of the study, and credibility checking, it is clear that incorporating participatory methods into IPA increases rigor and ensures that autistic perspectives are represented through research.
format	article
author	Gabrielle A. Heselton Gwen R. Rempel David B. Nicholas
author_facet	Gabrielle A. Heselton Gwen R. Rempel David B. Nicholas
author_sort	Gabrielle A. Heselton
title	Integrating Community Participation With Interpretative Phenomenological Analysis: Reflections on Engaging the Autism Community
title_short	Integrating Community Participation With Interpretative Phenomenological Analysis: Reflections on Engaging the Autism Community
title_full	Integrating Community Participation With Interpretative Phenomenological Analysis: Reflections on Engaging the Autism Community
title_fullStr	Integrating Community Participation With Interpretative Phenomenological Analysis: Reflections on Engaging the Autism Community
title_full_unstemmed	Integrating Community Participation With Interpretative Phenomenological Analysis: Reflections on Engaging the Autism Community
title_sort	integrating community participation with interpretative phenomenological analysis: reflections on engaging the autism community
publisher	SAGE Publishing
publishDate	2021
url	https://doaj.org/article/b700f212fe614555b8767fe866ea8106
work_keys_str_mv	AT gabrielleaheselton integratingcommunityparticipationwithinterpretativephenomenologicalanalysisreflectionsonengagingtheautismcommunity AT gwenrrempel integratingcommunityparticipationwithinterpretativephenomenologicalanalysisreflectionsonengagingtheautismcommunity AT davidbnicholas integratingcommunityparticipationwithinterpretativephenomenologicalanalysisreflectionsonengagingtheautismcommunity
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Integrating Community Participation With Interpretative Phenomenological Analysis: Reflections on Engaging the Autism Community

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