Disability Research in Australia: Deciding to Be a Research Participant and the Experience of Participation

Abstract

Little is known about why people with disability choose to take part in disability research and what their experience is like. Knowledge of this may help researchers and research ethics committees improve the empowered and ethical participation of people with disability in disability, healthcare, and human service focussed research. This cross-sectional mixed-methods study explored the perspectives and experiences of a group of Australian adults with disability regarding their involvement in research. Online surveys (N = 29) and follow-up interviews (N = 15) were conducted. The study found the decision to participate was a complex appraisal of benefit to self and others, research relevance, value, comfort, convenience, safety and risk. The attitudes and behaviours of researchers in cultivating trust by adopting an empathic approach to the conduct of disability research appear to be an important aspect of participant experience. Research ethics committees may benefit from knowledge of the ‘microethical’ moments that occur in such research.

Keywords

disability research participation motivation experience decision microethics empathy

Get full access to this article

View all access options for this article.

References

Almalki

(2016). Integrating quantitative and qualitative data in mixed methods research: Challenges and benefits. Journal of Education and Learning, 5(3), 288–296. https://doi.org/10.5539/jel.v5n3p288

Australian Institute of Health and Welfare. (2020). People with disability in Australia 2020: In brief (Cat. no. DIS77). AIHW, Canberra.

Bell

K. R.

Hammond

Hart

Bickett

A. K.

Temkin

N. R.

Dikmen

(2008). Participant recruitment and retention in rehabilitation research. American Journal of Physical Medicine & Rehabilitation, 87(4), 330–338. https://doi.org/10.1097/PHM.0b013e318168d092

Bevan

E. G.

Chee

L. C.

McGhee

S. M.

McInnes

G. T.

(1993). Patients’ attitudes to participation in clinical trials. British Journal of Clinical Pharmacology, 35(2), 204–207. https://doi.org/10.1111/j.1365-2125.1993.tb05687.x

Braun

Clarke

(2012). Thematic analysis. In H. Cooper, P. M. Camic, D. L. Long, A. T. Panter, D. Rindskopf, & K. J. Sher (Eds.), APA handbook of research methods in psychology, Vol. 2. Research designs: Quantitative, qualitative, neuropsychological, and biological (pp. 57-71). American Psychological Association. https://doi.org/10.1037/13620-004

Chapman

Dixon

Cox

Ehrlich

Kendall

(2022). The Dignity Project Framework: An extreme citizen science framework in occupational therapy and rehabilitation research. Australian Occupational Therapy Journal, 69(6), 742–752. https://doi.org/10.1111/1440-1630.12847

Conroy

N. E.

McDonald

K. E.

Olick

R. S.

Members

P. E. E. P.

(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

Creswell

J. W.

Plano Clark

V. L.

(2017). Designing and conducting mixed methods research. Sage publications.

Disability

N. C.

(2009). National disability policy: A progress report. https://ncd.gov/rawmedia_repository/d6386c15_2f93_4f69_a848_e496cbf79dda.pdf

10.

Feldman

M. A.

Bosett

Collet

Burnham-Riosa

(2014). Where are persons with intellectual disabilities in medical research?: A survey of published clinical trials. Journal of Intellectual Disability Research, 58(9), 800–809. https://doi.org/10.1111/jir.12091

11.

Guillemin

Gillam

(2004). Ethics, reflexivity, and “ethically important moments” in research. Qualitative Inquiry, 10(2), 261–280. https://doi.org/10.1177/1077800403262360

12.

Hassar

Weintraub

(1976). “Uninformed” consent and the wealthy volunteer: An analysis of patient volunteers in a clinical trial of a new anti-inflammatory drug. Clinical Pharmacology & Therapeutics, 20(4), 379–386. https://doi.org/10.1002/cpt1976204379

13.

Henzlova

M. J.

Blackburn

G. H.

Bradley

E. J.

Rogers

W. J.

(1994). Patient perception of a long-term clinical trial: Experience using a close-out questionnaire in the studies of left ventricular dysfunction (SOLVD) trial. Controlled Clinical Trials, 15(4), 284–293. https://doi.org/10.1016/0197-2456(94)90044-2

14.

Downs

Bulsara

Patman

Hill

(2018). Addressing challenges in gaining informed consent for a research study investigating falls in people with intellectual disability. British Journal of Learning Disabilities, 46(2), 92–100. https://doi.org/10.1111/bld.12217

15.

Iacono

Carling-Jenkins

(2012). The human rights context for ethical requirements for involving people with intellectual disability in medical research. Journal of Intellectual Disability Research, 56(11), 1122–1132. https://doi.org/10.1111/j.1365-2788.2012.01617.x

16.

Ivankova

Creswell

Stick

(2006). Using mixed-methods sequential explanatory design: From theory to practice. Field Methods, 18(1), 3–20. https://doi.org/10.1177/1525822X05282260

17.

Kidney

C. A.

McDonald

K. E.

(2014). A toolkit for accessible and respectful engagement in research. Disability & Society, 29(7), 1013–1030. https://doi.org/10.1080/09687599.2014.902357

18.

Kost

R. G.

Lee

L. M.

Yessis

Wesley

R. A.

Henderson

D. K.

Coller

B. S.

(2013). Assessing participant-centered outcomes to improve clinical research. The New England Journal of Medicine, 369(23), 2179–2181. https://doi.org/10.1056/NEJMp1311461

19.

Krahn

G. L.

Walker

D. K.

Correa-De-Araujo

(2015). Persons with disabilities as an unrecognised health disparity population. American Journal of Public Health, 105(S2), S198–S206. https://doi.org/10.2105/AJPH.2014.302182

20.

Moore

S. M.

(2012). Scientific reasons for including person with disabilities in clinical and translational diabetes research. Journal of Diabetes Science and Technology, 6(2), 236–241. https://doi.org/10.1177/193229681200600204

21.

Ouellette

(2019). People with disabilities in human subjects research: A history of exploitation, a problem of exclusion. Albany Law School Research Paper. https://dx.doi.org/10.2139/ssrn.3492078

22.

Planner

Bower

Donnelly

Gillies

Turner

Young

(2019). Trials need participants but not their feedback? A scoping review of published papers on the measurement of participant experience of taking part in clinical trials. Trials, 20(1), 1–12. https://doi.org/10.1186/s13063-019-3444-y

23.

Rios

Magasi

Novak

Harniss

(2016). Conducting accessible research: Including people with disabilities in public health, epidemiological, and outcomes studies. American Journal of Public Health, 106(12), 2137–2144. https://doi.org/10.2105/AJPH.2016.303448

24.

Singleton

J. L.

Jones

Hanumantha

(2014). Toward ethical research practice with deaf participants. Journal of Empirical Research on Human Research Ethics, 9(3), 59–66. https://doi.org/10.1177/1556264614540589

25.

The Hopkins Centre. (2021). Deciding whether to participate in research: A community resource for Australians who live with a disability. The Hopkins Centre and AHRECS, Menzies Health Institute Queensland, Griffith Univeristy. https://www.hopkinscentre.edu.au/project/supporting-ethical-inclusion-of-people-with-92

Supplementary Material

Please find the following supplemental material available below.

For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.

For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.

0.00 MB

0.03 MB