References

Chapter 1

American Psychological Association. (2021). Equity, Diversity, and Inclusion Framework. American Psychological Association. https://www.apa.org/about/apa/equity-diversity-inclusion/framework.pdf

Benz, C., Scott-Jeffs, W., McKercher, K. A., Welsh, M., Norman, R., Hendrie, D., Locantro, M., & Robinson, S. (2024). Community-based participatory-research through co-design: supporting collaboration from all sides of disability. Research Involvement and Engagement, 10(1), Article 47. https://doi.org/10.1186/s40900-024-00573-3

Beyond Sticky Notes. (2020). What is co-design?. https://www.beyondstickynotes.com/what-is-codesign

Case Western Reserve University. (2018, April 18). Universal Design for Research. https://case.edu/nursing/universal-design-research

Goodfellow L. T. (2023). An Overview of Survey Research. Respiratory care, 68(9), 1309–1313. https://doi.org/10.4187/respcare.11041

Ponto J. (2015). Understanding and Evaluating Survey Research. Journal of the advanced practitioner in oncology, 6(2), 168–171.

Rachele, J. N., Burn, G., Burke, K., & Alisic, E. (2024). Improving inclusion for children and young people with a disability in inner-city Melbourne, Australia. Cities, 150, 105103. https://doi.org/10.1016/j.cities.2024.105103

Sheridan, E. (2021, January 31). The curb cut effect: How universal design makes things better for everyone. Medium. https://uxdesign.cc/the-curb-cut-effect-universal-design-b4e3d7da73f5

Toronto Metropolitan University. (2025). Survey tool selection guide. https://www.torontomu.ca/courses/guide-to-tech/survey-selection-guide/

United Nations. (2021). Disability Inclusive Language Guidelines. United Nations. https://www.ungeneva.org/sites/default/files/2021-01/Disability-Inclusive-Language-Guidelines.pdf

Chapter 2

Andrews, E. E., Powell, R. M., & Ayers, K. (2022). The evolution of disability language: Choosing terms to describe disability. Disability and Health Journal, 15(3), 101328. https://doi.org/10.1016/j.dhjo.2022.101328

Carter-Long, L. (2017). Nothing feels real a third of the time. Ouch Talk Show presented by Kate Monaghan and Simon Minty. London, United Kingdom: British Broadcasting Company. Retrieved from https://www. bbc. com/news/disability-42223698.

Conroy, N. E., McDonald, K. E., & Olick, R. S. (2021). A survey study of the attitudes and experiences of adults with intellectual disability regarding participation in research. Journal of Intellectual Disability Research, 65(10), 941–948. https://doi.org/10.1111/jir.12877

Harvard University Program On Survey Research. (2007, November 17). TIP SHEET ON QUESTION WORDING. https://psr.iq.harvard.edu/sites/g/files/omnuum11131/files/psr/files/PSRQuestionnaireTipSheet_0.pdf

James, D. C. S., Harville, C., Whitehead, N., Stellefson, M., Dodani, S., & Sears, C. (2016). Willingness of African American Women to Participate in e-Health/m-Health Research. Telemedicine Journal and E-Health, 22(3), 191–197. https://doi.org/10.1089/tmj.2015.0071

Johansson, S., Gulliksen, J., & Gustavsson, C. (2021). Disability digital divide: the use of the internet, smartphones, computers and tablets among people with disabilities in Sweden. Universal Access in the Information Society, 20(1), 105–120. https://doi.org/10.1007/s10209-020-00714-x

Matthes, N., Willem, T., Buyx, A., & Zimmermann, B. M. (2024). Social Media Recruitment as a Potential Trigger for Vulnerability: Multistakeholder Interview Study. JMIR Human Factors, 11, e52448–e52448. https://doi.org/10.2196/52448

Mikulak, M., Ryan, S., Russell, S., Caton, S., Keagan‐Bull, R., Spalding, R., Ribenfors, F., & Hatton, C. (2022). ‘Internet is easy if you know how to use it’: Doing online research with people with learning disabilities during the COVID‐19 pandemic. British Journal of Learning Disabilities, 10.1111/bld.12495. https://doi.org/10.1111/bld.12495

Nicolaidis, C., Raymaker, D. M., McDonald, K. E., Lund, E. M., Leotti, S., Kapp, S. K., Katz, M., Beers, L. M., Kripke, C., Maslak, J., Hunter, M., & Zhen, K. Y. (2020). Creating Accessible Survey Instruments for Use with Autistic Adults and People with Intellectual Disability: Lessons Learned and Recommendations. Autism in Adulthood, 2(1), 61–76. https://doi.org/10.1089/aut.2019.0074

Sobolewski, J., Rothschild, A., & Freeman, A. (2024). The Impact of Incentives on Data Collection for Online Surveys: Social Media Recruitment Study. JMIR Formative Research, 8(1), e50240. https://doi.org/10.2196/50240

United Nations. (2019). DISABILITY-INCLUSIVE LANGUAGE GUIDELINES. https://www.ungeneva.org/sites/default/files/2021-01/Disability-Inclusive-Language-Guidelines.pdf

Chapter 3

Bishop, R., Laugharne, R., Shaw, N., Russell, A. M., Goodley, D., Banerjee, S., Clack, E., & Shankar, R. (2024). The inclusion of adults with intellectual disabilities in health research – challenges, barriers and opportunities: a mixed‐method study among stakeholders in England. Journal of Intellectual Disability Research, 68(2), 140–149. https://doi.org/10.1111/jir.13097

Government of Canada. (2023, January 11). TCPS 2 (2022) – Chapter 3: The Consent Process https://ethics.gc.ca/eng/tcps2-eptc2_2022_chapter3-chapitre3.html#10

Government of Canada. (2023, January 11). TCPS 2 (2022) – Chapter 5: Privacy and Confidentiality. https://ethics.gc.ca/eng/tcps2-eptc2_2022_chapter5-chapitre5.html

Government of Canada. (2024, April 5). Research Ethics Board: Consent process. https://www.canada.ca/en/health-canada/services/science-research/science-advice-decision-making/research-ethics-board/consent-process.html

Hamilton, J., Ingham, B., McKinnon, I., Parr, J. R., Tam, L. Y., & Le Couteur, A. (2017). Mental capacity to consent to research? Experiences of consenting adults with intellectual disabilities and/or autism to research. British Journal of Learning Disabilities, 45(4), 230–237. https://doi.org/10.1111/bld.12198

McMaster University. (2022, September 28). MREB Data Storage and Security Tools. https://research.mcmaster.ca/home/support-for-researchers/ethics/mcmaster-research-ethics-board-mreb/mreb-data-storage-and-security-tools/

Mistry, K., Merrick, S., Cabecinha, M., Daniels, S., Ragan, J., Epstein, M., Lever, L., Venables, Z. C., & Levell, N. J. (2024). Fraudulent Participation in Online Qualitative Studies: Practical Recommendations on an Emerging Phenomenon. Qualitative Health Research, 10497323241288181-. https://doi.org/10.1177/10497323241288181

Salmons, J. (2024, May 29). Avoid Scams, Imposters, and Fraud in Online Research Participation. Sage Research Methods Community. https://researchmethodscommunity.sagepub.com/blog/imposters-online-research

Santinele Martino, A., Perrotta, A., & McGillion, B. J. (2024). Who can you trust these days?: Dealing with imposter participants during online recruitment and data collection. Qualitative Research : QR, 24(5), 1291–1301. https://doi.org/10.1177/14687941231224591

Toronto Metropolitan University. (2017, November). GUIDELINES FOR OBTAINING CONSENT AND ASSENT. https://www.torontomu.ca/content/dam/research/documents/ethics/guidelines-for-obtaining-consent-and-assent-1.pdf