skip to main content
10.1145/3272973.3273003acmconferencesArticle/Chapter ViewAbstractPublication PagescscwConference Proceedingsconference-collections
abstract
Free Access

Conducting Research with Stigmatized Populations: Practices, Challenges, and Lessons Learned

Published:30 October 2018Publication History

ABSTRACT

Conducting research with communities who are at risk of being stigmatized can be a challenging endeavor. It is often difficult to reach and recruit individuals for research purposes regarding a stigmatized condition or situation. Yet, researchers in our field have recognized the importance of work in this area and have individually developed a range of strategies to reach, recruit, and work with these populations. This workshop will invite researchers and practitioners to present, discuss, and compare strategies and experiences when working with stigmatized communities in the context of the ever-evolving nature of technology. The outcomes of the workshop will include an outline for an article that will summarize the strategies and practices discussed as well as identify the approaches that have led to the best outcomes across different populations.

References

  1. Nazanin Andalibi and Andrea Forte. 2018. Announcing Pregnancy Loss on Facebook: A Decision-Making Framework for Stigmatized Disclosures on Identified Social Network Sites. In Proceedings of the 2018 CHI Conference on Human Factors in Computing Systems. ACM, 158. Google ScholarGoogle ScholarDigital LibraryDigital Library
  2. Patrick W Corrigan. 2014. The stigma of disease and disability: Understanding causes and overcoming injustices. American Psychological Association.Google ScholarGoogle Scholar
  3. Brenda L Curtis. 2014. Social networking and online recruiting for HIV research: ethical challenges. Journal of Empirical Research on Human Research Ethics 9, 1 (2014), 58--70.Google ScholarGoogle ScholarCross RefCross Ref
  4. Elizabeth V Eikey and Kayla M Booth. 2017. Recovery and maintenance: how women with eating disorders use Instagram. iConference 2017 Proceedings (2017).Google ScholarGoogle Scholar
  5. Bradley E Iott, Tiffany C Veinot, Jimena Loveluck, Erin Kahle, Leon Golson, and Akilah Benton. 2018. Comparative analysis of recruitment strategies in a study of men who have sex with men (MSM) in Metropolitan Detroit. AIDS and Behavior (2018), 1--16.Google ScholarGoogle Scholar
  6. Christopher A Le Dantec and W Keith Edwards. 2008. Designs on dignity: perceptions of technology among the homeless. In Proceedings of the SIGCHI conference on human factors in computing systems. ACM, 627--636. Google ScholarGoogle ScholarDigital LibraryDigital Library
  7. James D Livingston, Teresa Milne, Mei Lan Fang, and Erica Amari. 2012. The effectiveness of interventions for reducing stigma related to substance use disorders: a systematic review. Addiction 107, 1 (2012), 39--50.Google ScholarGoogle ScholarCross RefCross Ref
  8. Juan F Maestre, Haley MacLeod, Ciabhan L Connelly, Julia C Dunbar, Jordan Beck, Katie A Siek, and Patrick C Shih. 2018. Defining through expansion: conducting asynchronous remote communities (arc) research with stigmatized groups. In Proceedings of the 2018 CHI Conference on Human Factors in Computing Systems. ACM, 557. Google ScholarGoogle ScholarDigital LibraryDigital Library
  9. Gabriela Marcu, Nadia Dowshen, Shuvadittya Saha, Ressa Reneth Sarreal, and Nazanin Andalibi. 2016. TreatYoSelf: Empathy-driven behavioral intervention for marginalized youth living with HIV. In Proceedings of the 10th EAI International Conference on Pervasive Computing Technologies for Healthcare. ICST (Institute for Computer Sciences, Social-Informatics and Telecommunications Engineering), 69--76. Google ScholarGoogle ScholarDigital LibraryDigital Library
  10. Michael Massimi, Jill P Dimond, and Christopher A Le Dantec. 2012. Finding a new normal: the role of technology in life disruptions. In Proceedings of the acm 2012 conference on computer supported cooperative work. ACM, 719--728. Google ScholarGoogle ScholarDigital LibraryDigital Library
  11. Jeremiah Parry-Hill, Patrick C Shih, Jennifer Mankoff, and Daniel Ashbrook. 2017. Understanding volunteer at fabricators: opportunities and challenges in diy-at for others in e-nable. In Proceedings of the 2017 CHI Conference on Human Factors in Computing Systems. ACM, 6184--6194. Google ScholarGoogle ScholarDigital LibraryDigital Library
  12. Jessica A Pater, Oliver L Haimson, Nazanin Andalibi, and Elizabeth D Mynatt. 2016. "Hunger Hurts but Starving Works": Characterizing the presentation of eating disorders online. In Proceedings of the 19th ACM Conference on Computer-Supported Cooperative Work & Social Computing. ACM, 1185--1200. Google ScholarGoogle ScholarDigital LibraryDigital Library
  13. Scott D Rhodes, DA Bowie, and Kennet C Hergenrather. 2003. Collecting behavioural data using the world wide web: considerations for researchers. Journal of Epidemiology & Community Health 57, 1 (2003), 68--73.Google ScholarGoogle ScholarCross RefCross Ref
  14. Scott D Rhodes, Ralph J DiClemente, Heather Cecil, Kenneth C Hergenrather, and Leland J Yee. 2002. Risk among men who have sex with men in the United States: a comparison of an Internet sample and a conventional outreach sample. AIDS Education and Prevention 14, 1 (2002), 41--50.Google ScholarGoogle ScholarCross RefCross Ref
  15. Sabirat Rubya and Svetlana Yarosh. 2017. Video-Mediated Peer Support in an Online Community for Recovery from Substance Use Disorders.. In CSCW. 1454--1469. Google ScholarGoogle ScholarDigital LibraryDigital Library
  16. Nithya Sambasivan, Julie Weber, and Edward Cutrell. 2011. Designing a phone broadcasting system for urban sex workers in India. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems. ACM, 267--276. Google ScholarGoogle ScholarDigital LibraryDigital Library
  17. Stephen M Schueller and David C Mohr. 2015. Initial field trial of a coach-supported web-based depression treatment. In Proceedings of the 9th International Conference on Pervasive Computing Technologies for Healthcare. ICST (Institute for Computer Sciences, Social-Informatics and Telecommunications Engineering), 25--28. Google ScholarGoogle ScholarDigital LibraryDigital Library
  18. Angelika Strohmayer, Mary Laing, and Rob Comber. 2017. Technologies and Social Justice Outcomes in Sex Work Charities: Fighting Stigma, Saving Lives. In Proceedings of the 2017 CHI Conference on Human Factors in Computing Systems. ACM, 3352--3364. Google ScholarGoogle ScholarDigital LibraryDigital Library
  19. Jill Palzkill Woelfer, Amy Iverson, David G Hendry, Batya Friedman, and Brian T Gill. 2011. Improving the safety of homeless young people with mobile phones: values, form and function. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems. ACM, 1707--1716. Google ScholarGoogle ScholarDigital LibraryDigital Library

Index Terms

  1. Conducting Research with Stigmatized Populations: Practices, Challenges, and Lessons Learned

      Recommendations

      Comments

      Login options

      Check if you have access through your login credentials or your institution to get full access on this article.

      Sign in
      • Published in

        cover image ACM Conferences
        CSCW '18 Companion: Companion of the 2018 ACM Conference on Computer Supported Cooperative Work and Social Computing
        October 2018
        518 pages
        ISBN:9781450360180
        DOI:10.1145/3272973

        Copyright © 2018 Owner/Author

        Permission to make digital or hard copies of part or all of this work for personal or classroom use is granted without fee provided that copies are not made or distributed for profit or commercial advantage and that copies bear this notice and the full citation on the first page. Copyrights for third-party components of this work must be honored. For all other uses, contact the Owner/Author.

        Publisher

        Association for Computing Machinery

        New York, NY, United States

        Publication History

        • Published: 30 October 2018

        Check for updates

        Qualifiers

        • abstract

        Acceptance Rates

        CSCW '18 Companion Paper Acceptance Rate105of385submissions,27%Overall Acceptance Rate2,235of8,521submissions,26%

        Upcoming Conference

        CSCW '24

      PDF Format

      View or Download as a PDF file.

      PDF

      eReader

      View online with eReader.

      eReader