Applied principles for inclusive practice in neurodevelopmental research: A selection and report of illustrative case studies

Added on 23/02/2025

Type de contenu

Journal article of the type Perspective ( ; english)

Applied principles for inclusive practice in neurodevelopmental research: A selection and report of illustrative case studies published in the journal "Current developmental disorders reports" n°12, vol.1, 10 pages , doi: 10.1007/s40474-025-00318-1

- 9% of authors cited in the bibliography of this resource have publicly identified as autistic (10 out of 115 authors).
- 32% of references cited in this resource contain at least one author who has publicly identified as autistic (9 out of 28 references).

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Summary/Presentation

Inclusive research practices are important for neurodevelopmental studies, facilitating the involvement of community members throughout the research process. Highlighting this value, we reiterate our previously proposed framework for inclusive research practice and present a selection of case studies showcasing successful implementation of inclusive approaches.

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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.


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  • U. Hanemann (2015). "Learning Families: Intergenerational Approach to Literacy Teaching and Learning". UNESCO Institute for Lifelong Learning.

  • J. Jagosh, A. Macaulay, P. Pluye, J. Salsberg, P. Bush, J. Henderson, E. Sirett, G. Wong, M. Cargo, C. Herbert, S. Seifer, L. Green, T. Greenhalgh (2012). "Uncovering the Benefits of Participatory Research: Implications of a Realist Review for Health Research and Practice". Milbank Quarterly, 90(2). doi:10.1111/j.1468-0009.2012.00665.x

  • 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

  • C. Knight, T. Crick (2021). "The assignment and distribution of the dyslexia label: Using the UK Millennium Cohort Study to investigate the socio-demographic predictors of the dyslexia label in England and Wales". PLoS ONE, 16(8). doi:10.1371/journal.pone.0256114

  • Y. Lincoln, S. Lynham, E. Guba (2011). "Paradigmatic controversies, contradictions, and emerging confluences, revisited". The Sage Handbook of Qualitative Research, 4(2).

  • S. Lloyd-Evans, E. Oenga, L. Zischka, A. Mpofu-Coles, R. Woronka, M. Oveson, D. Hookway, M. Cleaver, S. Duval, E. Karanja, T. Gomma, K. Neupana, L. Ashcroft, S. Clare, D. Ma, H. Sundhararanjan, P. Watson, K. Tatys (2023). "Participatory action research: A toolkit". University of Reading.

  • M. Matejko, D. Poulton, L. Harvey-Nguyen, T. Boyens, I. Jackson, G. Pavlopoulou, S. Funnell, S. Lukito, RE-STAR PR Team (2023). "Enhancing participatory neuroscience research: the RE-STAR project perspectives". (Source)

  • A. Nordin, S. Kjellstrom, G. Robert, D. Masterson, K. Areskoug Josefsson (2023). "Measurement and outcomes of co-production in health and social care: a systematic review of empirical studies". BMJ Open, 13(9). doi:10.1136/bmjopen-2023-073808

  • C. Parbery‐Clark, R. Nicholls, L. McSweeney, S. Sowden, J. Lally (2024). "Coproduction of a resource sharing public views of health inequalities: An example of inclusive public and patient involvement and engagement". Health Expectations, 27(1). doi:10.1111/hex.13860

  • E. J.S. Sonuga-Barke, S. Chandler, S. Lukito, M. Kakoulidou, G. Moore, N. Cooper, M. Matejko, I. Jackson, B. Balwani, T. Boyens, D. Poulton, L. Harvey-Nguyen, S. Baker, G. Pavlopoulou (2024). "Participatory translational science of neurodivergence: model for attention-deficit/hyperactivity disorder and autism research". Br J Psychiatry, 224(4). doi:10.1192/bjp.2023.151

  • 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

  • E. Wilson, A. Kenny, V. Dickson-Swift (2018). "Ethical challenges of community based participatory research: exploring researchers' experience". International Journal of Social Research Methodology, 21(1). doi:10.1080/13645579.2017.1296714


 
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