Added on 24/10/2024
Journal article of the type Scientific literature review ( ; english)
*Three co-authors had publicly identified as autistic. [Learn more about this mention]
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Participatory methods are having sweeping effects on research across the globe. To facilitate transparency around these methods, Autism introduced mandatory reporting of community involvement in January 2021. Here, we sought to determine the impact of this policy. To do so, we – a team of Autistic and non-autistic researchers – searched for articles published in Autism in 2019, 2 years before policy implementation, and in 2022, 1 year after. We read 283 eligible articles and double coded each article for general information and details of community involvement. We found a fivefold increase (10.3% pre-implementation vs 54.5% post-implementation) in the reporting of community involvement. Most articles reported involving community members distally, in consulting roles, with researchers retaining full decision-making power. Furthermore, most community involvement was reported in more applied than basic research. A significant minority of papers (17%), however, could not be coded, owing to insufficient or vague information. While this increase in the reporting of community involvement is encouraging, more efforts need to be directed towards (1) improving the transparency in the reporting of community involvement and (2) increasing the frequency with which community members, especially Autistic people, share decision-making power equally with researchers – or even assume control of the research process.
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(1) References in blue are resources listed on our site.
(2) Authors listed in this bibliography whose names are in color have published other resources referenced on the site. Clicking on the name allows you to see the list of resources they have published and shared on the site.
(3) Authors whose names are followed by an asterisk have publicly disclosed being autistic.
-
S. Arnstein (1969). "A Ladder Of Citizen Participation". Journal of the American Institute of Planners, 35(4). doi:10.1080/01944366908977225
-
C. Balazs, R. Morello-Frosch (2013). "The Three Rs: How Community-Based Participatory Research Strengthens the Rigor, Relevance, and Reach of Science". Environmental Justice, 6(1). doi:10.1089/env.2012.0017
-
P. Beresford (2003). "User involvement in research: Exploring the challenges". NT Research, 8(1). doi:10.1177/136140960300800106
-
H. Bertilsdotter Rosqvist*, M. Botha*, K. Hens, S. O’Donoghue*, A. Pearson*, A. Stenning* (2023). "Cutting our own keys: New possibilities of neurodivergent storying in research". Autism, 27(5). doi:10.1177/13623613221132107
-
K. Black, C. Yongue Hardy, M. De Marco, A. Ammerman, G. Corbie-Smith, B. Council, D. Ellis, E. Eng, B. Harris, M. Jackson, J. Jean-Baptiste, W. Kearney, M. Legerton, D. Parker, M. Wynn, A. Lightfoot (2013). "Beyond Incentives for Involvement to Compensation for Consultants: Increasing Equity in CBPR Approaches". cpr, 7(3). doi:10.1353/cpr.2013.0040
-
M. Botha* (2021). "Academic, Activist, or Advocate? Angry, Entangled, and Emerging: A Critical Reflection on Autism Knowledge Production". Front. Psychol., 12. doi:10.3389/fpsyg.2021.727542
-
M. Boveda, S. Ancy Annamma (2023). "Beyond Making a Statement: An Intersectional Framing of the Power and Possibilities of Positioning". Educational Researcher, 52(5). doi:10.3102/0013189x231167149
-
M. Cargo, S. Mercer (2008). "The Value and Challenges of Participatory Research: Strengthening Its Practice". Annu. Rev. Public Health, 29(1). doi:10.1146/annurev.publhealth.29.091307.083824
-
Y. Cheng, B. Tekola, A. Balasubramanian, L. Crane, K. Leadbitter (2023). "Neurodiversity and community-led rights-based movements: Barriers and opportunities for global research partnerships". Autism, 27(3). doi:10.1177/13623613231159165
-
S. Davis, V. Pinfold, J. Catchpole, C. Lovelock, B. Senthi, A. Kenny (2024). "Reporting lived experience work". The Lancet Psychiatry, 11(1). doi:10.1016/s2215-0366(23)00402-9
-
J. den Houting*, J. Higgins*, K. Isaacs*, J. Mahony, E. Pellicano (2022). "From ivory tower to inclusion: Stakeholders' experiences of community engagement in Australian autism research". Front. Psychol., 13. doi:10.3389/fpsyg.2022.876990
-
J. den Houting*, E. Pellicano (2019). "A Portfolio Analysis of Autism Research Funding in Australia, 2008–2017". J Autism Dev Disord, 49(11). doi:10.1007/s10803-019-04155-1
-
S. Fletcher-Watson, S. Bölte, C. Crompton, D. Jones, M. Lai, W. Mandy, L. Pellicano, A. Stahmer, J. Taylor, D. Mandell (2021). "Publishing standards for promoting excellence in autism research". Autism, 25(6). doi:10.1177/13623613211019830
-
S. Fletcher-Watson, K. Brook*, S. Hallett*, F. Murray*, C. Crompton (2021). "Inclusive Practices for Neurodevelopmental Research". Curr Dev Disord Rep, 8(2). doi:10.1007/s40474-021-00227-z
-
M. Fricker (2007). "Epistemic Injustice".
-
M. Ann Gernsbacher, M. Yergeau (2019). "Empirical failures of the claim that autistic people lack a theory of mind.". Archives of Scientific Psychology, 7(1). doi:10.1037/arc0000067
-
H. Hobson, A. Linden, L. Crane, T. Kalandadze (2023). "Towards reproducible and respectful autism research: Combining open and participatory autism research practices". Research in Autism Spectrum Disorders, 106. doi:10.1016/j.rasd.2023.102196
-
H. Hobson, D. Poole, A. Pearson*, S. Fletcher-Watson (2022). "Opening up autism research: Bringing open research methods to our field". Autism, 26(5). doi:10.1177/13623613221105385
-
C. Howell (2010). "Statistical methods for psychology".
-
G. Hollin, W. Pearce (2019). "Autism Scientists' Reflections on the Opportunities and Challenges of Public Engagement: A Qualitative Analysis". J Autism Dev Disord, 49(3). doi:10.1007/s10803-018-3783-7
-
B. Israel, E. Parker, Z. Rowe, A. Salvatore, M. Minkler, J. López, A. Butz, A. Mosley, L. Coates, G. Lambert, P. Potito, B. Brenner, M. Rivera, H. Romero, B. Thompson, G. Coronado, S. Halstead (2005). "Community-Based Participatory Research: Lessons Learned from the Centers for Children's Environmental Health and Disease Prevention Research". Environ Health Perspect, 113(10). doi:10.1289/ehp.7675
-
J. Jivraj, L. Sacrey, A. Newton, D. Nicholas, L. Zwaigenbaum (2014). "Assessing the influence of researcher–partner involvement on the process and outcomes of participatory research in autism spectrum disorder and neurodevelopmental disorders: A scoping review". Autism, 18(7). doi:10.1177/1362361314539858
-
J. Richard Landis, G. Koch (1977). "The Measurement of Observer Agreement for Categorical Data". Biometrics, 33(1). doi:10.2307/2529310
-
K. Lloyd, J. White (2011). "Democratizing clinical research". Nature, 474(7351). doi:10.1038/474277a
-
A. Macaulay (2016). "Participatory research: What is the history? Has the purpose changed?". FAMPRJ. doi:10.1093/fampra/cmw117
-
L. Markauskaite, P. Goodyear (2017). "Epistemic Fluency and Professional Education". Professional and Practice-based Learning. doi:10.1007/978-94-007-4369-4
-
D. Masterson, K. Areskoug Josefsson, G. Robert, E. Nylander, S. Kjellström (2022). "Mapping definitions of co‐production and co‐design in health and social care: A systematic scoping review providing lessons for the future". Health Expectations, 25(3). doi:10.1111/hex.13470
-
M. Maye, B. Boyd, F. Martínez-Pedraza, A. Halladay, A. Thurm, D. Mandell (2022). "Biases, Barriers, and Possible Solutions: Steps Towards Addressing Autism Researchers Under-Engagement with Racially, Ethnically, and Socioeconomically Diverse Communities". J Autism Dev Disord, 52(9). doi:10.1007/s10803-021-05250-y
-
C. Michael (2021). "Is Being Othered a Co-Occurring Condition of Autism?". Autism in Adulthood, 3(2). doi:10.1089/aut.2021.0019
-
M. Munafò, B. Nosek, D. Bishop, K. Button, C. Chambers, N. Percie du Sert, U. Simonsohn, E. Wagenmakers, J. Ware, J. Ioannidis (2017). "A manifesto for reproducible science". Nat Hum Behav, 1(1). doi:10.1038/s41562-016-0021
-
n.a. (2018). "The best research is produced when researchers and communities work together". Nature, 562(7725). doi:10.1038/d41586-018-06855-7
-
J. Ocloo, R. Matthews* (2016). "From tokenism to empowerment: progressing patient and public involvement in healthcare improvement". BMJ Qual Saf, 25(8). doi:10.1136/bmjqs-2015-004839
-
Office of Autism Research Coordination. (2019). "2016 IACC autism spectrum disorder research portfolio analysis report". (Source)
-
V. Jane Palmer, W. Weavell, R. Callander, D. Piper, L. Richard, L. Maher, H. Boyd, H. Herrman, J. Furler, J. Gunn, R. Iedema, G. Robert (2019). "The Participatory Zeitgeist: an explanatory theoretical model of change in an era of coproduction and codesign in healthcare improvement". Med Humanities, 45(3). doi:10.1136/medhum-2017-011398
-
B. Patin, M. Sebastian, J. Yeon, D. Bertolini, A. Grimm (2021). "Interrupting epistemicide: A practical framework for naming, identifying, and ending epistemic injustice in the information professions". Asso for Info Science & Tech, 72(10). doi:10.1002/asi.24479
-
E. Pellicano (2020). "Commentary: Broadening the research remit of participatory methods in autism science – a commentary on Happé and Frith (2020)". Child Psychology Psychiatry, 61(3). doi:10.1111/jcpp.13212
-
E. Pellicano, A. Dinsmore, T. Charman (2014). "Views on Researcher-Community Engagement in Autism Research in the United Kingdom: A Mixed-Methods Study". PLoS ONE, 9(10). doi:10.1371/journal.pone.0109946
-
E. Pellicano, M. Stears (2011). "Bridging autism, science and society: moving toward an ethically informed approach to autism research". Autism Research, 4(4). doi:10.1002/aur.201
-
H. Pickard, E. Pellicano, J. den Houting*, L. Crane (2022). "Participatory autism research: Early career and established researchers' views and experiences". Autism, 26(1). doi:10.1177/13623613211019594
-
R. Poulsen, C. Brownlow, W. Lawson*, E. Pellicano (2022). "Meaningful research for autistic people? Ask autistics!". Autism, 26(1). doi:10.1177/13623613211064421
-
A. Price, S. Schroter, R. Snow, M. Hicks, R. Harmston, S. Staniszewska, S. Parker, T. Richards (2018). "Frequency of reporting on patient and public involvement (PPI) in research studies published in a general medical journal: a descriptive study". BMJ Open, 8(3). doi:10.1136/bmjopen-2017-020452
-
S. Michael Robertson (2016). "Neurodiversity, Quality of Life, and Autistic Adults: Shifting Research and Professional Focuses onto Real-Life Challenges". DSQ, 30(1). doi:10.18061/dsq.v30i1.1069
-
D. Raymaker* (2019). "Trust & what it takes to get there". (Source)
-
R Core Team. (2017). "R: A language and environment for statistical computing [Computer software]". R Foundation for Statistical Computing. (Source)
-
RStudio Team (2015). "RStudio: Integrated development for R [Computer software]".
-
L. Roche, D. Adams, M. Clark (2021). "Research priorities of the autism community: A systematic review of key stakeholder perspectives". Autism, 25(2). doi:10.1177/1362361320967790
-
D. Rose (2013). "Service user involvement in mental health research". Improving Mental Health Care. doi:10.1002/9781118337981.ch20
-
S. Staniszewska, J. Brett, I. Simera, K. Seers, C. Mockford, S. Goodlad, D. Altman, D. Moher, R. Barber, S. Denegri, A. Entwistle, P. Littlejohns, C. Morris, R. Suleman, V. Thomas, C. Tysall (2017). "GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research". BMJ. doi:10.1136/bmj.j3453
-
D. Weiting Tan (2023). "Early-Career Autism Researchers Are Shifting Their Research Directions: Tragedy or Opportunity?". Autism in Adulthood, 5(3). doi:10.1089/aut.2023.0021
-
E. Turnhout, T. Metze, C. Wyborn, N. Klenk, E. Louder (2020). "The politics of co-production: participation, power, and transformation". Current Opinion in Environmental Sustainability, 42. doi:10.1016/j.cosust.2019.11.009
-
S. Weschke, D. Louise Franzen, A. Karolina Sierawska, L. Bonde, D. Strech, S. Gabriele Schorr (2023). "Reporting of patient involvement: a mixed-methods analysis of current practice in health research publications using a targeted search strategy". BMJ Open, 13(1). doi:10.1136/bmjopen-2022-064170
-
O. Williams, S. Sarre, S. Constantina Papoulias, S. Knowles, G. Robert, P. Beresford, D. Rose, S. Carr, M. Kaur, V. Palmer (2020). "Lost in the shadows: reflections on the dark side of co-production". Health Res Policy Sys, 18(1). doi:10.1186/s12961-020-00558-0
-
T. Zreik, R. El Masri, S. Chaar, R. Ali, B. Meksassi, J. Elias, M. Lokot (2022). "Collaborative Coding in Multi-National Teams: Benefits, Challenges and Experiences Promoting Equitable Research". International Journal of Qualitative Methods, 21. doi:10.1177/16094069221139474
This resource is cited in 1 resource referenced on the site:
- Amanda Timmerman & coll. (2024, en), "Quality-of-life measurement in randomised controlled trials of mental health interventions for autistic adults: A systematic review".
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