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Autism spectrum disorder and the applied collaborative approach: a review of community based participatory research and participatory action research

Cheryl A Wright, Scott D Wright, Marissa L Diener, Jacqueline Eaton
2014 Journal of Autism  
An example of using an ecological model to explore the use of CBPR and PAR in autism research is presented.  ...  PAR designs and ecological models when designing their community engaged research methodology.  ...  Acknowledgement The authors would like to thank and acknowledge Darby Lorraine Fanning, Education Services Librarian, Marriott Library, University of Utah (Salt Lake City, UT) for her valuable professional  ... 
doi:10.7243/2054-992x-1-1 fatcat:yri7y3wmrvhyvekf7w7ubo6fkq

Development of an online resource for parents of young children newly diagnosed with autism: A participatory research design (Preprint)

Aspasia Stacey Rabba, Cheryl Dissanayake, Josephine Barbaro
2020 JMIR Pediatrics and Parenting  
A total of 15 participants (parents, n=3; clinicians, n=9; and researchers, n=3) attended individual or group participatory design workshops.  ...  The internet provides an ideal avenue to share information, advice, and support regarding autism.  ...  Acknowledgments The first author received a scholarship from the Cooperative Research Centre for Living with Autism (Autism CRC) to undertake this research.  ... 
doi:10.2196/15786 pmid:32996890 fatcat:y6f7xbs2bvczpkjmphe4ibtiq4

Participatory Systematic Empirical Observation and Special Education Training To Students With Autism

Drossinou-Korea Maria
2021 Zenodo  
This paper study is to explore possible benefits of participatory systematic empirical observation for the teacher who designs, implements teaching interventions to students with autism.  ...  The results highlight the advantages and disadvantages of participatory systematic empirical observation in autism research.  ...  in adults with autism, its design, improving the well-being of adults by diagnosis such as Asperger's syndrome or high functional autism.  ... 
doi:10.5281/zenodo.5797211 fatcat:eopdgccnhrfvhclext7jkywfru

Making the future together: Shaping autism research through meaningful participation

Sue Fletcher-Watson, Jon Adams, Kabie Brook, Tony Charman, Laura Crane, James Cusack, Susan Leekam, Damian Milton, Jeremy R Parr, Elizabeth Pellicano
2018 Autism  
In the context of a large and growing body of autism research, with continued poor implementation, and some evidence of community dissatisfaction, there is a powerful case for participatory autism research  ...  We call for the development of participatory research skills among the autism research community and the facilitation of greater autistic leadership of, and partnership in, research.  ...  Acknowledgements This work was authored by a sub-set of the Shaping Autism Research seminar series leaders, including the original co-applicants for funding and those who played an active role in shaping  ... 
doi:10.1177/1362361318786721 pmid:30095277 fatcat:4zhibhranrbz7bsksr6rgfuqta

Community-Based Participatory Research: Lessons Learned from the Centers for Children's Environmental Health and Disease Prevention Research

Barbara A. Israel, Edith A. Parker, Zachary Rowe, Alicia Salvatore, Meredith Minkler, Jesús López, Arlene Butz, Adrian Mosley, Lucretia Coates, George Lambert, Paul A. Potito, Barbara Brenner (+5 others)
2005 Environmental Health Perspectives  
Researchers and funding institutions have called for increased attention to the complex issues that affect the health of children living in marginalized communities-and communities more broadly-and have  ...  The burden of these health problems and environmental exposures is borne disproportionately by children from low-income communities and communities of color.  ...  " of such research; and f ) aims to improve health and well-being of the involved communities.  ... 
doi:10.1289/ehp.7675 pmid:16203263 pmcid:PMC1281296 fatcat:7uuxsvqvvrcapfstc4kuguf7oq

The Inclusion of Children on the Autism Spectrum in the Design of Learning Technologies: A Small-Scale Exploration of Adults' Perspectives

Bryan Boyle, Inmaculada Arnedillo-Sanchez
2022 Frontiers in Education  
It uncovers tension between the desire to ensure the authentic participation of children with autism where communication and engagement is significantly compromised by the complexity of their disability  ...  The study explores the challenges of equalising power between adults and children with autism in participatory design projects.  ...  Videos with integrated AAC visual scene displays to enhance participation in community and vocational activities: pilot case study with an adolescent with autism spectrum disorder. Perspect.  ... 
doi:10.3389/feduc.2022.867964 doaj:51d9c95dae1544c09deb76c58d6cf26a fatcat:5s2und6ywnhknlnlpkiqsl7nli

"We are the stakeholders with the most at stake": scientific and autism community co-researchers reflect on their collaborative experience in the CONNECT project

Caroline Jose, Patricia George-Zwicker, Louise Tardif, Aaron Bouma, Darlene Pugsley, Luke Pugsley, Mathieu Bélanger, Jeffrey Gaudet, Marc Robichaud
2020 Research Involvement and Engagement  
In order to fill this data gap, the CONtiNuity of carE and support for autistiC adulTs (CONNECT) project set out to learn about the health and well-being of autistic adults as well as their service and  ...  allowing for the involvement and participation of a more representative sample of adults on the autism spectrum.  ...  The CONNECT project also received important guidance and support from Brian Condran, MSSU Patient Engagement Coordinator (2016-2019), who also read and commented an early iteration of this manuscript.  ... 
doi:10.1186/s40900-020-00233-2 pmid:33005439 pmcid:PMC7520966 fatcat:h6va4ezpunalvpgbiobze5j3vq

Using Technology to Encourage the Participation of Persons with Disabilities: Exploring Cultural Leisure Activities in a Theatre Environment [chapter]

Zakia Hammouni, Walter Wittich, Eva Kehayia, Ingrid Verduyckt, Natalina Martiniello, Emilie Hervieux, Tiiu Poldma
2020 Advances in Intelligent Systems and Computing  
Embracing a participatory approach with attention given to persons with visual impairments, wheel-chair users, persons with language and communication limitations and those on the autism spectrum, data  ...  This paper presents a participatory collaborative research project that examines the challenges faced by people living with disability when accessing theatre performances, and how design, technology and  ...  Many thanks to all our partners, including the Segal Centre for Performing Arts, Federation CJA, Société Inclusive, CRIR/Institut Nazareth et Louis-Braille du CISSS de la Montérégie Centre, CRIR/Centre  ... 
doi:10.1007/978-3-030-55307-4_6 fatcat:gwbo3kwbj5cb7fb3nlfddj3evy

BUILDING A RESEARCH-COMMUNITY COLLABORATIVE TO IMPROVE COMMUNITY CARE FOR INFANTS AND TODDLERS AT-RISK FOR AUTISM SPECTRUM DISORDERS

Lauren Brookman-Frazee, Aubyn C. Stahmer, Karyn Lewis, Joshua D. Feder, Sarah Reed
2012 Journal of Community Psychology  
The group includes a transdisciplinary team of practitioners, funding agency representatives, researchers, and families of children with autism spectrum disorders, who partnered to improve community-based  ...  This article describes the formation and initial outcomes of a research-community collaborative group that was developed based on community-based participatory research principles.  ...  Louis; through an award from the National Institute of Mental Health (R25 MH080916). The authors thank Ember Lee and Tiffany Wang for their assistance preparing this manuscript; Drs.  ... 
doi:10.1002/jcop.21501 pmid:23878409 pmcid:PMC3716577 fatcat:ievnp3f4sjdefn2bwz3qji2nne

Understanding connectivity: The parallax and disruptive-productive effects of mixed methods social network analysis in occupational science

Melissa Park, Mary C. Lawlor, Olga Solomon, Thomas W. Valente
2020 Journal of Occupational Science  
used to understand occupational engagement and other constructs for humans as socially occupied beings.  ...  do with others nurtures the development and sustainability of social networks.  ...  Autism in an urban context The purpose of the Autism in urban context: Linking heterogeneity with health and service disparities 1 (AUCP) was to understand the experiences related to acquiring diagnosis  ... 
doi:10.1080/14427591.2020.1812106 fatcat:f3i6kkrbyje4tloixojzqahmju

Artificial Intelligence for Participatory Health: Applications, Impact, and Future Implications

Kerstin Denecke, Elia Gabarron, Rebecca Grainger, Stathis Th. Konstantinidis, Annie Lau, Octavio Rivera-Romero, Talya Miron-Shatz, Mark Merolli
2019 IMIA Yearbook of Medical Informatics  
Objective: Artificial intelligence (AI) provides people and professionals working in the field of participatory health informatics an opportunity to derive robust insights from a variety of online sources  ...  The objective of this paper is to identify current state of the art and application areas of AI in the context of participatory health.  ...  There are numbers of research challenges as well as opportunities for AI in participatory health that need to be considered.  ... 
doi:10.1055/s-0039-1677902 pmid:31022749 pmcid:PMC6697496 fatcat:l7sdf3cfwfc73es2xiwwamzjrm

A trial of the AASPIRE healthcare toolkit with Australian adults on the autism spectrum

Lisa R. J. Kang, Tim Barlott, Merrill Turpin, Anna Urbanowicz
2022 Australian Journal of Primary Health  
Future research should seek to explore the experiences of autistic adults using a version of the toolkit adapted for Australian use, as well as exploring the views of health professionals utilising it.  ...  The Academic Autism Spectrum Partnership in Research and Education (AASPIRE) developed and trialled an online healthcare toolkit to reduce such barriers and improve healthcare interactions between autistic  ...  We also extend our thanks to the staff at the Autism CRC and QCIDD, particularly Dr Katie Brooker, for their support throughout this project.  ... 
doi:10.1071/py21134 pmid:35550238 fatcat:2v4ez2l35nfavk6exdqomdmwsu

Inside, outside and in‐between: The process and impact of co‐producing knowledge about autism in a UK Somali community

Nura O. Aabe, Fiona Fox, Dheeraj Rai, Sabi Redwood
2019 Health Expectations  
However, relatively few accounts exist that explore the subjective experience of how co-researchers achieve such equality, from the perspectives of public contributors and researchers.  ...  Co-production is predicated on equal power-sharing and responsibility in research partnerships.  ...  communities in other cities and countries, who have less well-established networks of support, as well as for other BME groups who may face similar cultural challenges when seeking support for autism.  ... 
doi:10.1111/hex.12939 pmid:31318129 pmcid:PMC6737832 fatcat:rdz2cjn43faehjrrcbgjdijxvi

PuzzleWalk: A theory-driven iterative design inquiry of a mobile game for promoting physical activity in adults with autism spectrum disorder

Bogoan Kim, Daehyoung Lee, Aehong Min, Seungwon Paik, Georgia Frey, Scott Bellini, Kyungsik Han, Patrick C. Shih, Sunghoon Ivan Lee
2020 PLoS ONE  
Primary symptoms of adults with autism spectrum disorder (ASD), such as pervasive social deficits in social interaction and communication, cause adults with ASD to adopt a sedentary lifestyle.  ...  We report the design rationales and lessons learned across four user-centered design phases with ASD experts and adults with ASD, including user requirement gathering, iterative participatory design, usability  ...  management support), and improve their well-being and daily functions (e.g., communication, social, and problem-solving skills) [63, 64] .  ... 
doi:10.1371/journal.pone.0237966 pmid:32911501 fatcat:ysosjwhbqfc5dcyxafqgx7tdye

Building a Bridge Between Genetics and Outcomes Research: Application in Autism (The AutGO Study)

Zohreh Talebizadeh, Ayten Shah
2018 Patient  
Methods In phase I, we formed a community advisory board composed of 33 participants, including outcomes and genetics researchers, clinicians, healthcare providers, patients/family members, and community  ...  Objective Our project, Autism Genetics and Outcomes (AutGO), consists of two phases.  ...  to: (1) be aware of the communication gap and (2) dynamically participate in relevant dialogues to become an active partner in designing/conducting GO projects.  ... 
doi:10.1007/s40271-018-0302-z pmid:29508356 pmcid:PMC6019410 fatcat:gf7mxl2cofbxfar6h7zwqlfkiq
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