Ethical considerations and dilemmas when undertaking ‘inclusive’ research with vulnerable people
Keywords:
inclusive research, ethics, informed consent, learning disabilities
Abstract
Educational and other social research naturally involves serious consideration of ethical principles and practices. Indeed, studies involving vulnerable people (children, people with learning disabilities etc.) begins with ethical principles. These include ensuring the research furthers the interests of participants, who understand the nature of their contributions and how they inform the research. This paper explores the issues inherent in undertaking this kind of ‘inclusive’ practice with adults with learning disabilities. It discusses the need for effective information and how this may be mediated via accessible language, the involvement of intermediaries know to potential participants, and possible spoken explanations.
on the issue of ‘informed consent’, where the decision to participate (or not!) should be made, on ethical grounds, solely by the potential participant. In this case the ‘gatekeeper’ (defined later in this paper - but in brief, a person who facilitates access to research participants), considering the best interests of the person in their charge, heavily influenced the decision. The second vignette relates to someone who independently expressed a wish to participate, but who did not have the required experience or capability to understand the research, and the way this was dealt with ethically. As a conclusion, the paper asserts that resolving these dilemmas showed that treating people ‘ethically’ requires a great deal of flexibility, and considerations beyond what appear to be inviolable principals.
References
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Goldsmith, L. & Skirton, H. (2015). Research involving people with a learning disability – methodological challenges and ethical considerations. Journal of Research in Nursing, 20(6), 435-446HMG, 2005
Karreman, J., van der Geest, V., & Buursink, E. (2007) Accessible website content guidelines for users with intellectual disabilities Journal of Applied Research in Intellectual Disabilities 20(6) pp510-518
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Singh, S. & Wassenaar, D. (2016) Contextualising the role of the gatekeeper in social science research. South African Journal of Bioethics and Law9(1) pp.42-46
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Walmsley J, Johnson K (2003) Inclusive Research with People with Learning Disabilities: Past, Present and Futures London: Jessica Kingsley
Watchman, K. (2016). Investigating the lived experience of people with down syndrome with dementia: Overcoming methodological and ethical challenges. Journal of Policy and Practice in Intellectual Disabilities, 13(2), 190-198
Williams, P. & Hennig, C. (2015) Optimising website designs for people with learning disabilities Journal of Research in Special Educational Needs15(1) pp25-36
Williams, P. (2020a) Learning Disabilities and e-Information: navigating the electronic hypermaze Bingley: Emerald ISBN: 978-1-78973-152-1, eISBN: 978-1-78973-151-4
Williams, P. (2020b) ‘It all sounds very interesting, but we’re just too busy!’: exploring why ‘gatekeepers’ decline access to potential research participants with learning disabilities, European Journal of Special Needs Education, 35(1) pp.1-14,
Williams, P. Shekhar, S. (2019) People with learning disabilities and smartphones: testing the usability of a touch-screen interface Education Sciences 9(4) e263
Williams, P. (2019) A Tangled Web? How People with Learning Disabilities Negotiate the World Wide Web: The Accumulating Evidence International Journal of Computer Science and Mobile Computing 8(4) pp.317-324
Williams, P. (2017a) The digital lives of people with learning disabilities: methodological considerations Conference of the International Journal of Arts and Sciences 10(03) pp.209–214
Williams, P. (2017b) Eliciting web site preferences of people with learning disabilities Journal of Research in Special Educational Needs 17(1) pp.49-63
Williams, P., Nicholas D (2005) Creating online resources for the vulnerable Library and Information Update 4(4) pp30-31
Williams, P. (1999) Net Generation: the experiences, attitudes and behaviour of children using the Internet for their own purposes Aslib Proceedings 50(9) October pp315-322
Atkinson, D. (2010) Narratives and people with Learning Disabilities in Grant G, Ramcharam P, Flynn M, Richardson M (2010) Learning disability: a lifecycle approach Milton Keynes: Open University Press pp.7-18
Beauchamp, T. & Childress, J. (1989) Principles of biomedical ethics. 3rd. New York, Oxford: Oxford University Press
Bigby, C., Frawley, P. & Ramcharan, P. (2014). A Collaborative Group Method of Inclusive Research. Journal of Applied Research in Intellectual Disabilities, 27(1), 54-64.
BILD (British Institute of Learning Disabilities) (n.d.) Definitions of learning disabilities and learning difficulties Available at: http://www.bild.org.uk/EasySiteWeb/GatewayLink.aspx?alId=3961 (accessed 15.09.20)
Burke, C. (2005) Play in Focus: Children Researching Their Own Spaces and Places for Play Children, Youth, Environments 15(1) pp.27–53.
Cameron, L. & Murphy, J. (2007) Obtaining consent to participate in research: The issues involved in including people with a range of learning and communication disabilities British Journal of Learning Disabilities 35(2) pp113-120
Dean, E., Turner, S., Cash, J. & Winterbottom, P. (1998) Assessing the capacity to give consent Nursing Times 94(40) pp58–9
De Laine, M. (2000). Fieldwork, Participation and Practice: Ethics and Dilemmas in Qualitative Research Thousand Oaks, CA: SAGE
Emmel, N., K. Hughes, J. Greenhalgh, A. & Sales, A. (2007). Accessing socially excluded people – Trust and the gatekeeper in the researcher-participant relationship Sociological Research Online, 12. http://www.socresonline.org.uk/12/2/emmel.html
Farrimond, H. (2013) Doing ethical research Basingstoke: Palgrave
Gallacher, L. & Gallagher, M. (2008) Methodological Immaturity in Childhood Research?: Thinking through `participatory Methods' Childhood 15.4 (2008): 499-516
Goldsmith, L. & Skirton, H. (2015). Research involving people with a learning disability – methodological challenges and ethical considerations. Journal of Research in Nursing, 20(6), 435-446HMG, 2005
Karreman, J., van der Geest, V., & Buursink, E. (2007) Accessible website content guidelines for users with intellectual disabilities Journal of Applied Research in Intellectual Disabilities 20(6) pp510-518
Kellett, M. with original research contributions by young people with a learning disability: Allan Aoslin, Ross Baines, Alice Clancy, Lizzie Jewiss‐Hayden, Ryan Singh and Josh Strudgwick (2010) WeCan2: exploring the implications of young people with learning disabilities engaging in their own research, European Journal of Special Needs Education 25(1) pp.31-44
Lewis, A. and Porter, J. (2004) Interviewing children and young people with learning disabilities British Journal of Learning Disabilities 32(4) pp191-197
McClimens, A. (2008). This is my truth, tell me yours: Exploring the internal tensions within collaborative learning disability research. British Journal of Learning Disabilities, 36(4), 271-276.
Meisenberg, G. & Williams, A. (2008) Are acquiescent and extreme response styles related to low intelligence and education? Personality and Individual Differences, 4497) pp1539-1550
Morgan, F., Moni, K. & Cuskelly, M. (2015) The Development of Research Skills in Young Adults with Intellectual Disability in Participatory Research, International Journal of Disability, Development and Education, 62(4), pp.438-457
Nind, M. (2014) What is inclusive research? London: Bloomsbury
Perry, J. (2004) Interviewing people with intellectual disabilities in Emerson, E. (2004). The international handbook of applied research in intellectual disabilities. Chichester, West Sussex, England ; Hoboken, NJ: Wiley.pp.115-132
Prosser, H. and Bromley, J. (1998) Interviewing people with intellectual disabilities. In E. Emerson, C. Hatton, J. Bromley, A. Caine, E. Clinical psychology and people with intellectual disabilities New York, NY, US: John Wiley & Sons pp.99-113
Rafedzi, E. & Abrizah, A., (2016). Information needs of male juvenile delinquents. Information Development, 32(3) pp.592–607.
Rocha, T., Carvalho, D., Bessa, M. &Reis, S. (2018) Usability evaluation of navigation tasks by people with intellectual disabilities: a Google and SAPO comparative study regarding different interaction modalities. Universal Access in the Information Society, 2017, 16(3), pp.581–592.
Scott, J. K., Wishart, J. G., & Bowyer, D. J. (2006). Do current consent and confidentiality requirements impede or enhance research with children with learning disabilities?. Disability & Society, 21(3), 273-287.
Sigelman, C., Budd, E., Spanhel, C. & Schoenrock, C. (1981) When in doubt, say yes: Acquiescence in interviews with mentally retarded persons Mental Retardation 19(2) pp53–58
Singh, S. & Wassenaar, D. (2016) Contextualising the role of the gatekeeper in social science research. South African Journal of Bioethics and Law9(1) pp.42-46
Test, D., Fowler, C., Wood, W., Brewer, D. and Eddy, S. (2005) A conceptual framework of self-advocacy for students with disabilities Remedial and Special Education 26(1) pp43-54
VanReusen, A., Bos, C., Schumaker, J. & Deshler, D. (1994) The Self-Advocacy Strategy for Education and Transition Planning Lawrence, KS: Edge Enterprises
Walmsley J, Johnson K (2003) Inclusive Research with People with Learning Disabilities: Past, Present and Futures London: Jessica Kingsley
Watchman, K. (2016). Investigating the lived experience of people with down syndrome with dementia: Overcoming methodological and ethical challenges. Journal of Policy and Practice in Intellectual Disabilities, 13(2), 190-198
Williams, P. & Hennig, C. (2015) Optimising website designs for people with learning disabilities Journal of Research in Special Educational Needs15(1) pp25-36
Williams, P. (2020a) Learning Disabilities and e-Information: navigating the electronic hypermaze Bingley: Emerald ISBN: 978-1-78973-152-1, eISBN: 978-1-78973-151-4
Williams, P. (2020b) ‘It all sounds very interesting, but we’re just too busy!’: exploring why ‘gatekeepers’ decline access to potential research participants with learning disabilities, European Journal of Special Needs Education, 35(1) pp.1-14,
Williams, P. Shekhar, S. (2019) People with learning disabilities and smartphones: testing the usability of a touch-screen interface Education Sciences 9(4) e263
Williams, P. (2019) A Tangled Web? How People with Learning Disabilities Negotiate the World Wide Web: The Accumulating Evidence International Journal of Computer Science and Mobile Computing 8(4) pp.317-324
Williams, P. (2017a) The digital lives of people with learning disabilities: methodological considerations Conference of the International Journal of Arts and Sciences 10(03) pp.209–214
Williams, P. (2017b) Eliciting web site preferences of people with learning disabilities Journal of Research in Special Educational Needs 17(1) pp.49-63
Williams, P., Nicholas D (2005) Creating online resources for the vulnerable Library and Information Update 4(4) pp30-31
Williams, P. (1999) Net Generation: the experiences, attitudes and behaviour of children using the Internet for their own purposes Aslib Proceedings 50(9) October pp315-322
Published
2021-05-25
How to Cite
Williams, P. (2021). Ethical considerations and dilemmas when undertaking ‘inclusive’ research with vulnerable people . International Journal of Pedagogical Advances in Technology-Mediated Education, 2(2), 18 - 25. Retrieved from http://patme-journal.iatels.com/index.php/patme/article/view/ethical-considerations-and-dilemas
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Articles
