Search results for ‘Subject term:"learning disabilities"’ Sort:
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Concerns regarding the use of the vulnerability concept in research on people with intellectual disability
- Author:
- SNIPSTAD Oyvind Ibrahim Maroy
- Journal article citation:
- British Journal of Learning Disabilities, 50(1), 2022, pp.107-114.
- Publisher:
- Wiley
Background: People with intellectual disability are often defined as a vulnerable group. The feminist philosopher Jackie Scully argues that vulnerability is often associated with qualities such as immaturity, helplessness, victimhood, passivity and so forth. As research is a social activity, the qualities associated with vulnerability affect researchers' decisions about who to include and exclude from their research project as well as influencing their interpretations of the research participants' answers, behaviour and actions. This may result in excluding people with intellectual disability from research or that their ways of being becomes interpreted as mere symptoms of their diagnosis rather than subjective opinions and experiences. Conclusion: By addressing these issues through the work of Norwegian philosopher Hans Skjervheim, this paper contests traditional interpretations of vulnerability and instead argues that vulnerability should be related more specifically to each individual research project and prompt questions such as: How do we protect these particular participants from harm? (Edited publisher abstract)
Life stories, intellectual disability, cultural heritage and ethics: dilemmas in researching and (re)presenting accounts from the Scottish Highlands
- Authors:
- MARSHALL Karrie, TILLEY Liz
- Journal article citation:
- Ethics and Social Welfare, 7(4), 2013, pp.400-409.
- Publisher:
- Taylor and Francis
- Place of publication:
- Abingdon
This article reflects on the ethical dilemmas involved in undertaking research on the history of institutional and community intellectual disability services between 1966 and 2009 in a tight-knit community in Scotland, through the In Our Own Voices: Leaving New Craigs hospitals' story project. The accounts collected include painful memories of oppressive practice as well as fond recollections of community spirit, kindness and ‘good’ staff. However, the research stirred up sensitive issues amongst the community that left the researcher facing a number of challenges. In this article the authors will reflect on the ethics of investigating, confronting and disseminating difficult histories. (Publisher abstract)
An investigation of students' with mild learning disabilities reactions to participating in sexuality research
- Authors:
- THOMAS Gail, KROESE Biza Stenfert
- Journal article citation:
- British Journal of Learning Disabilities, 33(3), September 2005, pp.113-119.
- Publisher:
- Wiley
This study investigates 35 students' with mild learning disabilities reactions to participating in a research project exploring their sexual knowledge, attitudes and behaviour. Students completed an informed consent procedure prior to their participation in the sexuality research and all were interviewed using a confidential interview procedure. During the research interviews, each student's reaction to participation was observed and recorded by their interviewer. Following the interviews, each student's reaction to participation was observed and recorded by their college tutor. Researchers observed that although some students were embarrassed discussing certain sexual topics, none chose to stop their interviews when invited. Ten students requested additional information from their interviewers about the issues discussed. Tutors reported that no students appeared anxious or distressed following their interviews and that no inappropriate sexualized behaviour, or talk, were observed. Tutors also reported that several students appeared to have been positively affected by their participation. No tutors expressed concern about their students participating in similar research in the future. It is concluded that a number of methodological and participant factors may have accounted for the positive outcomes reported. The implications of these findings and recommendations for future research are discussed.
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.
Investigating the lived experience of people with Down syndrome with dementia: overcoming methodological and ethical challenges
- Author:
- WATCHMAN Karen
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 13(2), 2016, p.190–198.
- Publisher:
- Wiley
Adults with Down syndrome are at increased risk of dementia at a significantly younger age and remain under-represented as participants in dementia-related research. Because little is known about their personal experiences either immediately postdiagnosis or as dementia progresses, there is little opportunity that shared individual experiences can shape future policy and practice. To remedy this omission, the author examined methodological and ethical challenges identified as part of a research study that included people with Down syndrome affected by dementia. It has been contended that traditional qualitative approaches are less effective when participants are affected by changing cognitive functioning and reduced verbal communication. To counteract this contention overt participant observation and an adapted narrative research method were used as part of a three-year longitudinal study to help better understand the lived experiences of three adults with Down syndrome affected by dementia. Methodological and ethical challenges were shown to collide, and factors contributing to this effect included identifying process consent, accurate representation of participants, the role of and relationship with the researcher, participants, lack of awareness of their diagnosis of dementia, and need to recognize the importance of social interaction while maintaining academic rigor. Reflections are proffered on two conceptual and practice issues, with a call for both to be recognised and addressed in terms of future policy and practice. First is a lack of awareness of a sense of “self” or identity, resulting in individuals with Down syndrome and dementia being defined by their situation rather than individual preference or need. Second is the lack of information postdiagnosis about dementia being shared with people who have Down syndrome. (Publisher abstract)
‘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.
Ethics in quasi-experimental research on people with severe learning disabilities: dilemmas and compromises
- Authors:
- KELLETT Mary, NIND Melanie
- Journal article citation:
- British Journal of Learning Disabilities, 29(2), June 2001, pp.51-55.
- Publisher:
- Wiley
Examines the theme of research ethics focusing on the authors' quasi-experimental study evaluating the Intensive Interaction approach for pupils who are preverbal. Questions their own practice, and illustrates some of the dilemmas which they faced in their research and some of the compromises which they reached.