“Different but connected”: Participatory action research using Photovoice to explore well-being in autistic young adults

Autism ◽  
2020 ◽  
Vol 24 (5) ◽  
pp. 1246-1259 ◽  
Author(s):  
Gary Yu Hin Lam ◽  
Emily Holden ◽  
Megan Fitzpatrick ◽  
Linda Raffaele Mendez ◽  
Karen Berkman

Past research has largely focused on the negative aspects of well-being of autistic young adults during the post-school transition. Research that meaningfully includes autistic individuals and captures their perspectives of positive well-being is essential for stakeholders to better understand how to provide services that respond to the needs and wants of the autistic community. In the current study, 14 autistic young adults in a post-school transition program participated in a Photovoice project and used photos to express their ideas about well-being. A participatory action research approach was used to support participants’ active engagement in the research processes and to encourage meaningful expression of their first-person perspectives. Results revealed an account of well-being reflecting expressions of individuality and growth, the significance of having close relationships, and a sense of connection with the community. This study has implications for research and practice that promotes well-being among the autistic community using approaches that are ethically informed and inclusive of autistic voices. Lay abstract Past research has mainly focused on autistic people’s deficits and poor outcomes compared to other groups of people. Little is known about their positive life experiences, and how to support them to achieve a higher quality of life. It is important to include autistic individuals in research so that they can influence how their voices are represented in a meaningful way and how the research results will be useful to them. In this study, a university researcher collaborated with 14 autistic young adults in a post-school transition program to design and run the research, collect and analyze the data, and use the results to create a presentation to the community. Specifically, the participants took photos in daily life and discussed their ideas about what a good life means to them. Results showed that these young adults described themselves as uniquely and different, but they were eager to learn and adapt. They also valued their relationships with their families, friends, and animals around them, as well as the community at large. This research shows that autistic individuals have important perspectives to share and knowledge to contribute when they are given the opportunities to participate in different aspects of research. The findings will be useful in developing services and influencing policies that promote well-being among autistic adults.

Dementia ◽  
2021 ◽  
pp. 147130122199728
Author(s):  
Sherry Dupuis ◽  
Carrie McAiney ◽  
Lisa Loiselle ◽  
Brenda Hounam ◽  
Jim Mann ◽  
...  

This article describes the use of a participatory action research (PAR) approach to developing a self-management resource for persons living with dementia and care partners. Despite growing evidence that persons with dementia are able to contribute in meaningful ways to decision-making about their care and life preferences, few opportunities exist for them to participate in the design of resources and services meant for them. There is also a need to support the self-management of persons living with dementia with the provision of accurate, high quality, user-friendly information. The Living Well with Dementia resource was developed through a partnership with persons with dementia, family members, Alzheimer Society representatives, primary care providers, and researchers. The methods used in the development of this resource are outlined in six steps employed in this process, from establishment of a PAR team to final resource creation. Informed by a whole systems approach, the resource brings together essential components of self-management into a comprehensive system of care and support for living. It empowers users to be active participants in the application of new knowledge to their lives. Better self-management has important implications for access to health care and quality of life for persons with dementia and care partners.


2018 ◽  
Vol 22 (1) ◽  
Author(s):  
Lorena Duna ◽  
◽  
Juanita Salvani ◽  
Marivic Paday ◽  
Joy Daproza ◽  
...  

participatory, community, technologies, adoption, sustainability


Author(s):  
Tom Ellis

Tackling racism in prisons has a relatively long policy, practice, and research history in England and Wales. However, clear evidence of success in reducing racism in prisons has been, and still is, difficult to find. This article is based on a unique study that was carried out either side of the new millennium (late 1999 to mid-2001), but no equivalent exercise has been repeated since. Due to a unique set of circumstances at the time the study was carried out, it became possible to employ an action research approach that required policymakers, practitioners, volunteers, and researchers to agree on: an emergent research design; implementation; intervention; and measurement. There are many forms of action research, but this study could best be defined as a “utilization-focused evaluation, which is particularly applicable to the criminal justice environment. This approach also included elements of participatory action research.” The emphasis here is to show how the action research approach can be both more systematic and more flexible than traditional social science approaches. This applies to both epistemological and research methods considerations, because, by combining theory and action, action research can provide a more viable way of ensuring that policy works in practice, and is sensitive to unique institutional exigencies. Throughout, discussion is contextualised using policy, research and methodology texts from the period when the research was commissioned, but given an overall methodological context by referencing more recent methodology text books. The article first outlines the context in which the action research study was commissioned, before providing a summary of the international research findings on race relations in prisons, from which key concepts for the project were initially operationalized. The chapter then explains how the specific participatory action research approach was selected as the most appropriate design, the extent to which the approach was successful, and why. The article ends with a discussion of the implications of findings and conclusions from this study for current policy and methodological approaches.


2020 ◽  
Vol 48 (8) ◽  
pp. 2491-2503
Author(s):  
Noel L. Shadowen ◽  
Nancy G. Guerra ◽  
Ryan Beveridge ◽  
Elizabeth K. McCoy

Sign in / Sign up

Export Citation Format

Share Document