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Research:Investigating Neurodivergent Wikimedian Experiences

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Created
20:00, 30 April 2024 (UTC)
Duration:  2024-June – 2024-December

This page documents a research project in progress.
Information may be incomplete and change as the project progresses.
Please contact the project lead before formally citing or reusing results from this page.


This project will focus on exploring discussions about being neurodivergent and participating in Wikimedia projects. There are no existing studies on neurodivergent Wikimedians, although there are numerous discussions about the representation of this potentially vast population in public forums.

In Part 1, we will ask what topics are discussed in existing public conversations about being neurodivergent and participating in Wikimedia projects? Part 1 will involve conducting a content analysis of existing public discussions about neurodivergent Wikimedians to investigate present discourse. This content analysis will help define a research area and inform the second part of this work. In Part 2, we will ask, what are important methodological considerations for the design of future studies on neurodivergent Wikimedians? In Part 2, we will create a set of research design recommendations for future research on neurodivergent Wikimedians given that studying demographic groups requires careful planning and risk considerations.

Anyone interested in understanding the makeup of the Wikimedia community and supporting contributors, including organizers and technical support might be interested in this work. The potential impact of this work is to increase understanding of how to support Wikimedian wellbeing, including through understanding the challenges faced by neurodivergent Wikimedians. This work may also contribute to our understanding of neurodivergent peopleʼs experiences in work and volunteering contexts. In addition, this work may contribute to our understanding of neurodiversity and online culture, and research methods of studying the demographics of international, networked communities.

Methods[edit]

Part 1: Content Analysis[edit]

A content analysis of existing discussions about participating in Wikimedia and being neurodivergent will be conducted. Content analysis is a qualitative method to study discourse involving the creation of a corpus, followed by qualitative coding.[1] A log of search terms to collect data will be reported. The corpus will be created by querying pages across English Wikimedia platforms, including essays, talk pages, user pages, and policies. Due to many forms of interaction on Wikimedia platforms, threaded discussions, user boxes and categories are all content formats that may be included in the corpus. Contextual data on data items will also be collected, such as the nature of surrounding discussions and media. This data will be important to understand Wikimedians on their own terms in forums where community issues are discussed.

The authors intend to use grounded theory for the analysis of the corpus, which involves creating qualitative codes based on keyword usage, subjects discussed, framings, and other emergent properties in the corpus, and labeling data items with these codes.[2] Then, researchers synthesize underlying patterns. We will interpret the results with care towards intersectional forms of marginalization and biasing that may appear in myriad ways at any point in the research process. Given the subject area, we will look out for comments that relate to concerns about disclosure, non-disclosure and masking[3] and how these might impact Wikimedia community awareness of the experiences and representation of neurodivergent contributors.

Part 2: Research Design for Future Studies of Neurodivergent Wikimedians[edit]

Part 2 will involve creating methods and methodological recommendations for future studies about neurodivergent Wikimedians. This component of the proposal is necessary because the novelty of this research area and the complexities of studying demographic groups, particularly those with potentially vulnerable populations, requires time and care spent investigating methods, potential bias and risks, and ways to involve the community in representing themselves. We will create actionable recommendations for future research design that might be useful for researchers and movement advocates designing future studies about neurodivergence in online communities.

As part of our methodological work, authors expect to document difficulties in applying the term neurodivergence in research contexts, given diagnoses and access to medicine, legal definitions, and protections of disability status differ internationally.[4] Diagnoses that are commonly referenced as part of the neurodiversity category include autism, ADHD, dyslexia, OCD, dissociative disorders, personality disorders, anxiety, and other brain disorders, behavioral disorders, and mood disorders.[5] While the term neurodivergence implies inclusivity across brain differences, it is also necessary for researchers of neurodivergent populations to define criteria of inclusion in the category for the purposes of data collection.

Timeline[edit]

  • June-July, 2024 - Data Collection
  • August-September, 2024 - Analysis, begin research publication
  • October-November, 2024 - Research publication and public report writing and submission

Expected output[edit]

  • An open-access research publication.
  • A research report published on a Wikimedia page for a general audience.
  • A public report with recommendations for future researchers.

Policy, Ethics and Human Subjects Research[edit]

This study does not include the participation of human research subjects. Risks include creating unwanted or negative public attention on the population studied. We plan to dialogue with the Wikimedia community and other researchers at Wikimania and other forums as this project develops, to expand our awareness of potential risks. To protect the privacy of the authors of the public textual data analyzed, we will not use direct quotations or usernames in related publications, and will paraphrase quotes if/when necessary. Researchers also commit to developing a process for including texts originating from potentially sensitive contexts in our dataset, beginning with identifying indicators of sensitive contexts, such as discussions on talk pages done in time-critical contexts, or indicators of excited states or states of distress. Such a set of indicators of sensitive contexts may be useful for other Wikimedia researchers. Any public data set created for this project would only include textual data sources designed with the public in mind, such as Wikipedia essays, rather than Talk page messages or other internal, community-oriented discussions. Authors will exclude items not clearly intended for public audiences.

Results[edit]

The study is currently in progress.

  • 2024 WikiWorkshop, 20 June, 2024, Extended Abstract (virtual workshop presentation) - Accepted [1]
  • Wikimania 2024, 7-10 August, 2024, Poster - Accepted [2]

Resources[edit]

The study is in progress. Links to presentations, blog posts, or other ways in which the work is disseminated will be updated on an ongoing basis.

References[edit]

  1. Krippendorff, Klaus (2018). Content Analysis: An Introduction to Its Methodology (4 ed.). Sage Publications. 
  2. Clarke, Adele E. (2005). Situational Analysis: Grounded Theory After the Postmodern Turn. Sage Publications. 
  3. Davidson, Joyce; Henderson (2010-03-01). "‘Coming out’ on the spectrum: autism, identity and disclosure". Social & Cultural Geography. 
  4. Doyle, Nancy (2020-01-01). "Neurodiversity at work: a biopsychosocial model and the impact on working adults". British Medical Bulletin. 
  5. Armstrong, Thomas (2011). The Power of Neurodiversity: Unleashing the Advantages of Your Differently Wired Brain. Cambridge, MA: DaCapo/Perseus Publishing Group. ISBN 9780738215242.