Main Article Content
Background and objective
Historically, Fetal Alcohol Spectrum Disorder (FASD) research has been conducted on individuals with lived experience rather than with them. This article draws on feedback from workshops with individuals with lived experience, in which a collaborative approach was followed, drawing on patient-oriented and participatory action research methods. We provide an overview of the feedback, including barriers to participation alongside strategies to address these barriers, facilitating meaningful involvement in the research process. The writing team includes those with lived experience and research backgrounds. In addition, we make a distinction between the experience of those with FASD (what is called “in-body lived experience”) and those that have caregiver experience (what is called “in-home lived experience”). By lowering barriers, the goal is to bring in the many different perspectives of those with lived experience.
Material and methods
A keynote presentation and two workshops were held in 2018 at an international FASD conference bring-ing together individuals, families, agencies, and researchers. Participants were asked what they required to participate in FASD research more thoroughly. The goal was to understand barriers to participating in FASD research. In the first workshop (n=65), imagined for general conference participants including caregivers, service providers, policymakers, and researchers but primarily attended by caregivers and service providers, participants were asked to rank barriers through a “dotmocracy” process. Dotmocracy (or dot-voting) is a collaborative prioritization technique commonly used in group facilitation. A tally of the number of dots assigned to each barrier by participants was used to rank the importance of the barriers identified. Small groups discussed strategies to address the top 10 barriers. In the second workshop, composed of adolescents and adults with FASD (n=60), the participants were asked to share the obstacles they faced in research as a collaborator or as a research participant and their suggestions for future research area priorities.
Participants in the first workshop noted core concerns, including the need for financial support, barriers to informed participation, unconscious bias of researchers, lack of a common language, lack of time and support to participate, absence of shared leadership in the research, perceived absence of benefits for participants, lack of accommodation for the unique needs of individuals with lived experience, scarcity of resources to accommodate those needs and insufficient communication on current FASD research projects. The information from individuals with FASD was similar and focused on the unique needs and barriers to fully participating in FASD research either as a collaborator or research participant. For example, participants identified the need for researchers to accommodate language comprehension differences, memory issues, anxiety, and sensory issues experienced by individuals with FASD. In addition, they identified barriers to participation such as finances, lack of transportation, insecure housing, and childcare demands. Finally, participants noted that FASD is a spectrum disorder and people on all ends of the spectrum need to have a voice.
The workshops provided a wealth of information regarding research areas on which to focus, unique needs and barriers to participation, and their need to have a voice. Research that is attentive to each of these groups’ unique needs will allow for the inclusion of the widest group of individuals that identify as having lived experience relative to FASD. As a result, patient-oriented and participatory action research can be better represented in the field of FASD.
This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.
Copyright of articles published in all DPG titles is retained by the author(s). The author(s) grants DPG the rights to publish the article and identify itself as the original publisher. The author grants DPG exclusive commercial rights to the article. The author grants any party the rights to use the article freely for non-commercial purposes provided that the original work is properly cited.
2. Baum F, MacDougall C, Smith D. Participatory action research. J Epidemiol Community Health 2006; 60(10):854-857. https://dx.doi.org/10.1136%2Fjech.2004.028662
3. Berne P, Morales AL, Langstaff D, Invalid S. Ten principles of disability justice. WSQ 2018;46(1):227-230. https://doi.org/10.1353/wsq.2018.0003
4. Marquis, E., Guitman, R., Nguyen, E., & Woolmer, C. (2021). ‘It’s a little complicated for me’: faculty social location and experiences of pedagogical partnership. Higher Education Research & Development, 40(6), 1191-1204.
5. Crenshaw, K. W. (1991). Mapping the margins: Intersectionality, identity politics, and violence against women of color. Stanford Law Review, 43(6), 1241–1299. https://doi.org/10.2307/1229039 https://blogs.law.columbia.edu/critique1313/files/2020/02/1229039.pdf
6. Badry D, Felske AW. An exploratory study on the use of Photovoice as a method for approaching FASD prevention in the Northwest Territories. First Peoples Child & Family Review 2013;8(1):143-160. Available from: https://fpcfr.journals.publicknowledgeproject.org/index.php/FPCFR/article/view/207
7. Michaud D, Temple V. The complexities of caring for individuals with fetal alcohol spectrum disorder: The perspective of mothers. J Dev Disabil 2013;19(3):94-101. Available from:
8.Cook JL, Green CR, Lilley CM, Anderson, SM, Baldwin, ME, Chudley, AE et al. Fetal alcohol spectrum disorder: a guideline for diagnosis across the lifespan. CMAJ 2016;188(3):191-197. https://doi.org/10.1503/cmaj.141593
9. Roozen S, Olivier L, Niemczyk J, von Gontard A, Gjalt-Jorn, YP, Kok, G, et al. Nocturnal incontinence in children with fetal alcohol spectrum disorders (FASD) in a South African cohort. J Pediatr Urol 2017;13(5):496.E1-496.E7. https://doi.org/10.1016/j.jpurol.2017.02.009
10. Chambers CD. Health disparities in fetal alcohol spectrum disorders. In APHA’s 2018 Annual Meeting & Expo (Nov. 10-Nov. 14): American Public Health Association, 2018. Available from: https://apha.confex.com/apha/2018/meetingapi.cgi/Session/55275?filename=2018_Session55275.html&template=Word
11. Brown J, Helmstetter D, Harr D, Singh J. Perceptions of FASD by United States district attorneys. J. Intellect. Disabil. Offending Behav. 2016;7(4):195-201. https://doi.org/10.1108/JIDOB-04-2016-0005
12. Hand L, Pickering M, Kedge S, McCann C. Oral language and communication factors to consider when supporting people with FASD involved with the legal system. In: Nelson M, Trussler M, editors. Fetal alcohol spectrum disorders in adults: Ethical and legal perspectives. Springer; 2016. p. 139-147. DOI: 10.1007/978-3-319-20866-4_9
13. Millar J A, Thompson J, Schwab D, Hanlon-Dearman A, Goodman, D, Koren, G, Masotti. P. Educating students with FASD: linking policy, research and practice. J. Res. Spec. Educ. Needs 2017;17(1):3-17. https://doi.org/10.1111/1471-3802.12090
14. Popova S, Lange S, Shield K, Mihic A, Chudley, AE, Mukherjee, RAS, Bekmuradov, D, Rehm, J. Comorbidity of fetal alcohol spectrum disorder: a systematic review and meta-analysis. Lancet 2016;387(10022):978-987. https://doi.org/10.1016/S0140-6736(15)01345-8
15. Wang CC. Photovoice: A participatory action research strategy applied to women’s health. J Womens Health 1999;8(2):185-192. https://doi.org/10.1089/jwh.1999.8.185
16. Sample PL. Beginnings: Participatory action research and adults with developmental disabilities. Disabil Soc 1996;11(3):317-332. https://doi.org/10.1080/09687599627633
17. Di Pietro N, De Vries J, Paolozza A, Reid D, Reynolds, JN, Salmon, A, et al. Ethical Challenges in Contemporary FASD Research and Practice: A Global Health Perspective. Camb Q Healthc Ethics 2016;25(4):726-732. DOI:10.1017/S096318011600044X
18. Liboiron M, Ammendolia J, Winsor K, Zahara, A, Bradshaw, H, Melvin, J, et al. Equity in Author Order: A Feminist Laboratory’s Approach. Catalyst 2017;3(2). https://doi.org/10.28968/cftt.v3i2.28850.
19. Wagner AE. Unsettling the academy: Working through the challenges of anti‐racist pedagogy. Race Ethn Educ 2005;8(3):261-275. https://doi.org/10.1080/13613320500174333
20. Stewart M, Caines R, Kotlar-Livingston A. On Neoliberal Thirst, Audit Hunger, and Sustaining Strengths-Based Research in Community and Academy. Can. J. Res 2020;21(1):67-86. Available from: https://journals.nipissingu.ca/index.php/cjar/article/view/520
21. Löfman P, Pelkonen M, Pietilä AM. Ethical issues in participatory action research. Scand J Caring Sci 2004;18(3):333-340. https://doi.org/10.1111/j.1471-6712.2004.00277.x.
22. Whyte WF. Advancing scientific knowledge through participatory action research. Sociol Forum 1989;4:367–385. https://doi.org/10.1007/BF01115015
23. Zaal, M, Ayala J. “Why don’t we learn like this in school?” One participatory action research collective’s framework for developing policy thinking. J. Curric. Stud. 2013;29(2):159-173. Available from: https://journal.jctonline.org/index.php/jct/article/view/481/pdf
24. McTaggart R. Is validity really an issue for participatory action research? Studies in Cults., Orgs. and Socs 1998;4(2):211-236. https://doi.org/10.1080/10245289808523513
25. Dassah E, Aldersey HM, Norman KE. Photovoice and persons with physical disabilities: A scoping review of the literature. Qual Health Res 2017;27(9):1412-1422. https://doi.org/10.1177%2F1049732316687731
26. Cook T, Brandon T, Zonouzi M, Thomson L. Destabilising equilibriums: harnessing the power of disruption in participatory action research. Educ. Action Res. 2019;27(3):379-395. https://doi.org/10.1080/09650792.2019.1618721
27. Fine M, Torre ME, Oswald AG, Avory S. Critical participatory action research: Methods and praxis for intersectional knowledge production. J Couns Psychol 2021;68(3):344-356. https://psycnet.apa.org/doi/10.1037/cou0000445
28. George MA, Masotti P, MacLeod S, Van Bibber M, Loock, C, Fleming, M, et al. Bridging the research gap: Aboriginal and academic collaboration in FASD prevention. The healthy communities, mothers and children project. Alaska Med 2007;49(2 Suppl):139-41. Available from: https://www.researchgate.net/profile/Jennifer-Ranford/publication/5914832_Bridging_the_research_gap_aboriginal_and_academic_collaboration_in_FASD_prevention_The_Healthy_Communities_Mothers_and_Children_Project/links/544f93b80cf2bca5ce92a75f/Bridging-the-research-gap-aboriginal-and-academic-collaboration-in-FASD-prevention-The-Healthy-Communities-Mothers-and-Children-Project.pdf
29. Hidalgo ES. Dotmocracy and planning Poker for uncertainty management in Collaborative research: two examples of co-creation techniques derived from digital culture. In: Proceedings of the Sixth International Conference on Technological Ecosystems for Enhancing Multiculturality; 2018. 833-839. http://dx.doi.org/10.1145/3284179.3284325
30. Valentine G. Geography and ethics: in pursuit of social justice ethics and emotions in geographies of health and disability research. Prog Hum Geogr 2003;27(3):375-380. https://doi.org/10.1191%2F0309132503ph438pr
31. Iacono T. Ethical challenges and complexities of including people with intellectual disability as participants in research. J Intellect Dev Disabil 2006;31(3):173-179. https://doi.org/10.1080/13668250600876392
Cascio A and Racine E. Research Involving Participants with Cognitive Disability and Differences. The Neuroethics Blog; 2019. Retrieved on April 15, 2022, from http://www.theneuroethicsblog.com/2019/10/research-involving-participants-with.html