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These self-evident truths: power and control in intellectual disability research
- Author:
- McCLIMENS Alex
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 35(2), June 2010, pp.64-65.
- Publisher:
- Taylor and Francis
This paper discusses the paper by Bigby and Frawley in this journal issue on the involvement of a person with intellectual disability as a co-researcher in a large multimethod study. This commentary discusses the problems that the co-researcher had with the role expected of him, and argues that the research design needed to be altered to allow him to fit in the research team. It also discusses dilemmas regarding authorship and ownership of research. Finally, it discusses the need for pragmatism in research involving researchers with learning difficulties. It concludes that there are faults and trials in the research process which need to be considered in order to secure better representation within intellectual disability research.
Challenges to conducting randomised controlled trials with adults with intellectual disabilities: experiences of international experts
- Authors:
- MULHALL Peter, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 34(3), 2021, pp.891-904.
- Publisher:
- Wiley
Background: Globally, conducting randomised controlled trials can be a complex endeavour. The complexity increases when including participants with cognitive or intellectual disabilities. A fuller understanding of the barriers and challenges that can be expected in such trials may help researchers to make their trials more inclusive for people with disabilities. Method: Semi‐structured interviews were conducted with twelve international trial experts. Results: Eight themes emerged relating to challenges linked to: 1) participant co‐morbidities, 2) participant ability levels, 3) ethics and consent, 4) the RCT methodology, 5) gatekeeping, 6) staff turnover, 7) lack of technical understanding and 8) attitudes and perceptions. Conclusion: Conducting trials with cognitively disabled participants can pose unique challenges although many can be overcome with ‘reasonable adjustments’. Challenges that are harder to overcome are attitudes and perceptions that people (professional staff, funding bodies, carers or fellow researchers) hold towards the utility of conducting trials with cognitively disabled populations. (Edited publisher abstract)
Co-researching with adults with learning disabilities roles, resonsibilities and boundaries
- Author:
- REDMOND Mark
- Journal article citation:
- Qualitative Social Work, 4(1), March 2005, pp.75-86.
- Publisher:
- Sage
Traditional social research rarely considers ‘research as it is experienced'. Instead, it promotes a detached, objective stance, where sanitized accounts hide the issues and dilemmas researchers encounter. Yet the researcher is a central player in the research exercise, and ‘cannot be left behind... from discussions and written accounts’. This article explores the journey and the dilemmas the author has experienced whilst coordinating a participatory research programme with adults with learning disabilities. It considers the roles he has assumed, and explores his relationship with those with whom he is working. As one member of a research team, the author found himself introduced to issues related to the everyday lives of the co-researchers, and which appeared to have little to do with the wider project. Yet these symbolized the need for independence and autonomy, issues implicit in the wider project. As such, this article traces a journey from a position of objective detachment to one which requires the clearer articulation of values and principles, and which ultimately demands alignment.
Some ethical and methodological issues in research with people with learning difficulties
- Author:
- STALKER Kirsten
- Journal article citation:
- Disability and Society, 13(1), February 1998, pp.5-19.
- Publisher:
- Taylor and Francis
This article discusses some ethical and methodological issues arising in a recent study examining the exercise of choice by people with learning difficulties. The research aimed to examine in detail the choice-making process, and to explore ways of involving people with learning difficulties both as respondents and as a contributors to the study design. Reflecting on experience gained in this study and on research reported elsewhere, a number of pointers for future research are drawn. These include the need to consider the potential implications of intellectual impairment for involvement in the research process.
Ethical dilemmas in historical research with people with learning difficulties
- Author:
- ROLPH S.
- Journal article citation:
- British Journal of Learning Disabilities, 26(4), 1998, pp.135-139.
- Publisher:
- Wiley
This article discusses the ethics of historical research with people with learning difficulties, and in particular those issues which arrive in both oral and archival history. The histories that have existed have been written predominantly from an official viewpoint, have not included the views of people with learning difficulties themselves, and have tended therefore to be partial accounts. A new development of the 1980s and 90s has been the growing interest by people with learning difficulties in reclaiming their histories. Highlights some of the issues which occur in this new historical research and discusses the methods adopted in an attempt to solve them.
Doing research with lonely people
- Author:
- BOOTH Wendy
- Journal article citation:
- British Journal of Learning Disabilities, 26(4), 1998, pp.132-134.
- Publisher:
- Wiley
Eleven years ago the author was involved in a research study that looked at the effects of relocating people with learning difficulties from long-stay institutions into less restrictive accommodation. She became friends with one of the women who was moving from hospital and they still see each other often. Two subsequent research studies have also left a legacy of people who phone or write to her on a regular basis. This article addresses the ethical implications of including lonely people in research.
Doing research on people with learning disabilities, cancer and dying: ethics, possibilities and pitfalls
- Authors:
- TUFFREY-WIJNE Irene, BERNAL Jane, HOLLINS Shelia
- Journal article citation:
- British Journal of Learning Disabilities, 36(3), September 2008, pp.185-190.
- Publisher:
- Wiley
There has been increasing recognition of the fact that people with learning disabilities can and should be involved as active participants in research. However, in the area of cancer and palliative care, they continue to be protected and excluded from contributing to expanding our knowledge base and the shaping of care provision. This paper explores the issues involved in including people with learning disabilities as participants in research around cancer, death and dying. It stems from the authors' own experience of conducting research around cancer and palliative care, where people with learning disabilities were the key informants. Methodological issues include the choice of methodology and problems around recruiting a sample. Ethical issues include informed consent, participants' requests to forego anonymity, observation of sub-optimal care and issues around the boundaries between the roles of researcher and clinician.
Ethical challenges of life story research with ex-prisoners with intellectual disability
- Author:
- ELLEM Kathleen
- Journal article citation:
- Disability and Society, 23(5), August 2008, pp.497-509.
- Publisher:
- Taylor and Francis
This paper outlines the ethical considerations when engaging in life story research with ex-prisoners with intellectual disability. Based on a study conducted in Queensland, Australia, the authors explore some of the challenges that have arisen through the lens of principle-based ethics. The significant disadvantage experienced by ex-prisoners with intellectual disability warrants further attention by social researchers, and care must be taken not to further harm this group through the research process. Issues pertaining to the broad ethical concepts of integrity, justice, respect for persons and beneficence are examined to identify the degree to which they can guide the actions of the life story researcher. Examples are given as to how the researcher responded to difficulties as they arose and the authors discuss ways forward from a principle-based approach.
‘I’m a researcher!’: working together to gain ethical approval for a participatory research study
- Authors:
- HAM Maria, et al
- Journal article citation:
- Journal of Learning Disabilities, 8(4), December 2004, pp.397-407.
- Publisher:
- Sage
In any research team individuals will bring different experiences and expertise to the study, but if research is to be truly participatory then there must be the opportunity for all of the research team to be involved in all stages of the research process if they so wish. This includes the stage of seeking and gaining ethical approval. To date, however, there does not appear to have been anything published about how people with intellectual disabilities can be supported to actively participate in this stage of the research process. This article seeks to address this gap. Preparing for the ethics committee, and gaining ethical approval, constitute an important learning experience. The authors hope that in sharing this with others that they will be able to learn from this experience and that the opportunities for other people with intellectual disabilities to become involved in research will increase.
Gaining ethical approval for research into sensitive topics: two strikes and you're out?
- Authors:
- HAYS Sarah-Jane, MURPHY Glynis, SINCLAIR Neil
- Journal article citation:
- British Journal of Learning Disabilities, 31(4), December 2003, pp.181-189.
- Publisher:
- Wiley
The authors describe their experiences working with Multi-Centre Research Ethics Committees on a research proposal designed to assess the efficacy of cognitive behaviour therapy for men with intellectual disabilities who are at risk of sexual offending. The article describes the challenges faced by researchers designing research on sensitive topics and provides an example of the difficulties they encountered in working with Multi-Centre Research Ethics Committees. Questions whether the issue of study design should be part of the Multi-Centre Research Ethics Committees remit; whether the Committees were sufficiently responsive to concerns raised by researchers; whether they always understood the research; and whether the Central Officer for Research Ethics Committees should disallow re-submission after rejection by two Multi-Centre Research Ethics Committees.