More of a hurdle race than a sprint! Social care research in the field of disabilities: Methodological considerations and challenges

Authors

  • Áine de Róiste Cork Institute of Technology
  • Aiofe Killeen Dept of Applied Social Studies, Cork Institute of Technology
  • Moira Jenkins

DOI:

https://doi.org/10.1921/swssr.v21i1.1369

Abstract

A concise review is presented of some of the common ethical and methodological considerations encountered by researchers in the field of disability. The discussion draws on theory and practice to explore the ‘hurdles’ faced by researchers and how these can be addressed within a broader goal of inclusive research.

Author Biography

Moira Jenkins

Dept of Applied Social Studies, Cork Institute of Technology

References

Assisted Decision Making (Capacity) Act 2015. Accessed at: http://www.irishstatutebook.ie/eli/2015/act/64/enacted/en/html

Attia, M. and Edge, J. (2017) Be(com)ing a reflexive researcher: a developmental approach to research methodology. Open Review of Educational Research, 4, 1, 33-45, DOI: 10.1080/23265507.2017.1300068

Banks, J., Maître, B. and McCoy S. (2015) Insights within the lives of children with disabilities: Findings from the 2006 National Disability Survey. Dublin: NDA & ESRI

Boxall, K. and Ralph, S. (2009) Research ethics and the use of visual images in research with people with intellectual disability. Journal of Intellectual & Developmental Disability, 34(. 1.45-54. DOI: 10.1080/13668250802688306

Chapman, R. (2014) An exploration of the self-advocacy support role through collaborative research: ‘There should never be a ‘Them and Us’. Journal of Applied Research in Intellectual Disabilities 27, 44-53

Criminal Justice (Withholding of Information on Offences against Children and Vulnerable Persons) Act 2012 Available at http://www.irishstatutebook.ie/eli/2012/act/24/enacted/en/html

Dickert, N., and Grady, C. (1999) What’s the price of a research subject? Approaches to payment for research participation. New. England Journal of Medicine, 341, 3, 198–203

Dickert N. and Grady C. (2008) Incentives for research participants. In E.J. Emanuel, C. Grady, R.A. Crouch, R.K. Lie, F.G. Miller, and D. Wendler (Eds) The Oxford Textbook of Clinical Research Ethics. New York: Oxford University Press (pp.386-396)

Disability Act 2005. Available at http://www.irishstatutebook.ie/eli/2005/act/14/section/2/enacted/en/html

Fleming, P. McGilloway, S. and Barry, S. (2017) Day service provision for people with intellectual disabilities: A case study mapping 15-year trends in Ireland. Journal of Applied Research in Intellectual Disabilities, 30, 383–394

Gelinas, L., Largent, E., Cohen, G., Kornetsky, S., Bierer, B.E., and Fernandez Lynch, H. (2018) Framework for Ethical Payment to Research Participants New England Journal of Medicine, 378, 8, 766-771

General Data Protection Regulation (EU) Available at https://eugdpr.org/ Accessed Jan. 2019

Goffman, E. (1963) Stigma: Notes on the management of spoiled identity. New York: Simon & Schuster

Grady, C. (2001) Money for research participation: Does it jeopardize informed consent? American Journal of Bioethics, 1, 2, 40–44

Inclusive Research Network, National Federation of Voluntary Bodies and National Institute for Intellectual Disability (2010) Relationships and Supports Study: People with Intellectual Disabilities in Ireland. Dublin: Trinity College, Dublin, National Institute for Intellectual Disability Ireland

Irish Longitudinal Study on Ageing. Available at IDS-TILDA http://www.idstilda.tcd.ie/ Accessed May 2018

Criminal Justice (Withholding of Information on Offences against Children and Vulnerable Persons) Act 2012 Available at http://www.irishstatutebook.ie/eli/2012/act/24/enacted/en/html

Johnson, K. (2009) No longer researching about us without us: A researcher’s reflection on rights and inclusive research in Ireland. British Journal of Learning Disabilities, 37, 250-256

Johnson, K., Minogue G. and Hopkins, R. (2014) Inclusive Research: Making a Difference to Policy and Legislation. Journal of Applied Research in Intellectual Disabilities, 17, 76-84

Kennedy, L. and Brewer, G. (2014) Creative methodologies to enhance communication. Journal of Learning Disabilities, 44, 35-42

Killeen, A. (2014) The Divide at 65: Implications for domiciliary care delivery for older people with physical disabilities in Ireland. (Unpublished doctoral thesis) Cork, Ireland: Cork Institute of Technology

Lemmens, T, and Elliott, C. (2001) Justice for the professional guinea pig. American Journal of Bioethics. 1, 51–53

Link, B.G. and Phelan, J.C. (2001) Conceptualizing stigma. Annual Review. Sociology, 27, 363-385

Lykes, M.B. (2000) Possible contributions of a psychology of liberation: whither health and human rights? Journal of Health Psychology, 5, 383-98

MacGiolla Phadraig, C., Dougall, A., Stapleton, S., McGeowan, D., Nunn, J. and Guerin, S. (2015) What should dental services for people with disabilities in Ireland be like? Agreed priorities from a focus group of people with learning disabilities. British Journal of Learning Disabilities, 44, 259-268. https://doi.org/10.1111/bld.12152

Mann, S. (2016).The research interview: Reflective practice and reflexivity in research processes. London, England: Palgrave Macmillan

Manning, C. (2009), ‘My memory’s back!’ Inclusive learning disability research using ethics, oral history and digital storytelling. British Journal of Learning Disabilities, 38, 160–167

Mansell, J. (2011) Structured observational research in services for people with learning disabilities. SSCR methods review, 10. London : NIHR School for Social Care Research

McCormack, B. and Farrell, M. (2009) Translating quality of life into service action: Use of personal outcome measures in the Republic of Ireland. British Journal of Learning Disabilities, 37, 300-307

McDonald and Patka, M. (2012) ‘There is no black or white’: Scientific community views on ethics in intellectual and developmental disability research. Journal of Policy and Practice in Intellectual Disabilities, 9, 3, 206–214

Mental Capacity Act (2005) Available at https://www.legislation.gov.uk/ukpga/2005/9/contents. Accessed May 2018

Michael, S. (2005) The promise of appreciative inquiry as an interview tool for field research. Development in Practice, 15, 222– 230

National Council for Voluntary Organizations https://www.ncvo.org.uk/ Accessed May 2018

National Disability Authority (2002) ‘Ask me’: Guidelines for effective consultation for people with disabilities. Available at http://nda.ie/nda-files [Accessed May 2018]

National Disability Authority (2009) Ethical Guidance for Research with People with Disabilities. Dublin: NDA

National Federation of Voluntary Bodies. Available at http://www.fedvol.ie/Inclusive_Research_Network_IRN/Default.241.html. Accessed May 2018

Peklar, J., Kos, M., O’Dwyer, M., McCarron, M., McCallion, P., Kenny, R., and Henman, M. (2017) Medication and supplement use in older people with and without intellectual disability: An observational cross-sectional study. PLOS ONE 12, 9, 1-1-15

Penketh, V., Hare, D., Flood, A. and Walker, S. (2014) Attachment in adults with intellectual disabilities: Preliminary investigation of the psychometric properties of the Manchester Attachment Scale-Third party observational measure. Journal of Applied Research in Intellectual Disabilities, 27, 458-470

Robinson, G., Priede, C., Farrall, Shapland, J. and McNeill, F. (2013) Doing ‘strengths-based’ research: Appreciative inquiry in a probation setting. Criminology and Criminal Justice, 13, 1, 3-20

Schroeder, D. (2007) Benefit sharing: it’s time for a definition. Journal of Medical Ethics, 33, 205-9. DOI:10.1136/jme.2006.016790

UN General Assembly, Convention on the Rights of Persons with Disabilities: resolution / adopted by the General Assembly, 24 January 2007, A/RES/61/106, Available at: https://www.refworld.org/docid/45f973632.html [accessed May 2018]

UN General Assembly, Convention on the Rights of the Child, 20 November 1989, United Nations, Treaty Series, vol. 1577, p. 3, Available at: https://www.refworld.org/docid/3ae6b38f0.html [accessed May 2018]

United Nations (2018) General Comment No. 7.UN Doc No. CRPD/C/GC/7. Accessed at https://www.ohchr.org/en/hrbodies/crpd/pages/gc.aspx [accessed Jan. 2019]

Walmsley, J. and Johnson, K. (2003) Inclusive Research with People with Learning Disabilities: Past, present and futures. London: Jessica Kingsley

Whitehurst, T. (2006) Liberating silent voices: Perspectives of children with profound and complex learning needs on inclusion. British Journal of Learning Disabilities, 27, 46-51

Wilkinson, M. and Moore, A. (1999) Inducements revisited. Bioethics, 13, 114-130

World Health Organisation (2018) Disabilities. Available at http://www.who.int/topics/disabilities/en/

Published

2020-03-22

How to Cite

de Róiste, Áine, Killeen, A., & Jenkins, M. (2020). More of a hurdle race than a sprint! Social care research in the field of disabilities: Methodological considerations and challenges. Social Work and Social Sciences Review, 21(1), 110-127. https://doi.org/10.1921/swssr.v21i1.1369

Issue

Section

Articles
Received 2020-03-22
Accepted 2020-03-22
Published 2020-03-22