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“There is no black or white”: scientific community views on ethics in intellectual and developmental disability research
- Authors:
- MCDONALD Katherine, PATKA Mazna
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 9(3), September 2012, pp.206-214.
- Publisher:
- Wiley
The inclusion of adults with intellectual and developmental disabilities in research raises ethical questions about how to promote involvement while minimising exposure to harm. The aim of this study was to examine the views of researchers who conduct this research and ethics review board members on how to conduct ethically strong research with adults with intellectual and developmental disabilities. Four focus groups were conducted with 8 researchers and 9 ethics review board members. The participants were asked to discuss how to ethically conduct research, relevant factors to consider, appropriate ways to address ethical concerns, and the role of ethical and civil rights principles. The findings indicate support for the use of ethical principles and newer models of disability to promote inclusion in research, a focus on researchers' interpersonal skills and relationships to participants, questions about the best approaches to recruitment, consent, and compensation, and strategies to promote participation in research.
Getting involved in research
- Authors:
- HOWARTH Joyce, HURLEY Karen, O'CONNOR Chris
- Journal article citation:
- Llais, 104, Autumn 2012, pp.10-13.
- Publisher:
- Learning Disability Wales
The Welsh Government has made a commitment to involving people in planning services for the NHS. This article describes how Aneurin Bevan Health Board and 5 local authorities are involving people with a learning disability in the research process. Specifically, it describes a workshop which was conducted in order to find out what priorities people with learning disabilities in the Gwent area have for research. The workshop was attended by 25 people with learning disabilities and 15 professionals. The workshop started with explaining the research process. The participants then went into groups to discuss what they thought should be researched. Voting to identify the topics considered to be of most importance resulted in the following top 3: independence; parents’ issues; and communication. Groups of participants then formed to discuss research questions relating to each of these topics. The hope now is to be able to fund continued planning of these priority research areas.
Looking into abuse: research by people with learning disabilities
- Author:
- HOWARTH Joyce
- Journal article citation:
- Llais, 103, Summer 2012, pp.12-15.
- Publisher:
- Learning Disability Wales
People with learning disabilities are acknowledged as one of the most vulnerable groups in society. Studies give estimates of the numbers who have been victims of abuse ranging from 30 – 50%. Identification of abuse is recognised as problematic, so the issue could be even greater than these figures suggest. It is usually staff who are asked to report abuse, with little involvement of the people who have been affected. This article describes a unique project that involved people with a learning disability as researchers into abuse, rather than just being passive subjects of research. Ten years ago the Unit for Development in Intellectual Disabilities (UDID) at the University of Glamorgan brought together an advisory group of people with learning disabilities. Named TRAC, the Teaching and Research Advisory Committee meets monthly and advises on teaching and research initiatives from their position as experts in living with learning disabilities. The author describes the work that has been done.
The Learning Disability Research Conference: Working together
- Authors:
- CHAPMAN Rohhss, BLYTH Craig
- Journal article citation:
- Learning Disability Today, October 2012, pp.22-24.
- Publisher:
- Pavilion
- Place of publication:
- Hove
In April 2012, the learning disability studies programme at the University of Manchester hosted a conference on partnership research. In partnership research, learning disabled researchers undertake a central role in various aspects of research projects. This may be through partnerships with academics or as dedicated research teams. The ‘Learning Disability Research Conference: Working together’ was an inclusive event organised specifically for students so that they could have the opportunity to hear and discuss a range of cutting-edge projects presented by partnership researchers from the UK and abroad. As well as students, attendees included learning disabled people and their families, staff working in learning disability services, and disability studies academics and researchers. This article provides an overview of the papers presented at the conference. It also describes a new part-time master’s course in critical learning disabilities studies which is being launched at the University of Manchester.
Any added value? Co-constructing life stories of and with people with intellectual disabilities
- Author:
- KOENIG Oliver
- Journal article citation:
- British Journal of Learning Disabilities, 40(3), September 2012, pp.213-221.
- Publisher:
- Wiley
Although there has been increased involvement of people with intellectual disability in research, they have been largely excluded from the areas of data analysis and theory development. One reason for this might be that not many people with intellectual disability have received training in research. The paper presents data from the first core research project in German-speaking countries that was carried out within an inclusive framework. The FWF (Austrian Science Fund) financed project ‘Experiences of participation in the (vocational) biography of people with intellectual disability’ at the University of Vienna aimed to look at the life stories and narratives of people with intellectual disability during transition from school to work and in working life. The project included the formation of a ‘reference group’ which aimed to involve people with intellectual disability in the process of co-construction of theory through the shared analysis of the collected qualitative data. The findings from the reference group demonstrate the ‘added value’ of including people with intellectual disability in the analysis of qualitative data. The group are shown to bring new insights that broaden the theoretical sensitivity and analytical focus and also influence the direction of further analysis.
Participatory research with men with learning disability: informed consent
- Authors:
- COOK Tina, INGLIS Pamela
- Journal article citation:
- Tizard Learning Disability Review, 17(2), 2012, pp.92-101.
- Publisher:
- Emerald
People with learning disability are increasingly being involved in, and taking control of, research. The purpose of this paper is to add to current understandings of how people with learning disability make informed choices in relation to participation in research. It aims to highlight both the competencies of people with learning disability in relation to participation in research and the impact of their involvement on the quality of that research. The study participants were 7 men with learning disabilities and staff from the medium secure unit where they reside. The study involved a participatory/collaborative approach. Workshops were designed to promote discussion on topics related to research, consent and ethics. Data was collected at the workshops, at pre- and post-workshop interviews, and using diaries. The findings demonstrate that the complexities of research and the implications of participation were poorly understood. Collaborative, recursive approaches are important for developing understanding. In addition, participation in the research approach by people with learning disabilities enabled the generation of new understandings. A set of principles to support informed decision making is provided.
What is right? Ethics in intellectual disabilities research
- Authors:
- McDONALD Katherine E., KIDNEY Colleen A.
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 9(1), March 2012, pp.27-39.
- Publisher:
- Wiley
There are important benefits to including with adults with intellectual disabilities in research. This review explored the literature on ethical practices associated with research with adults with intellectual disabilities. It conducted a thematic analysis of 37 articles that met inclusion criteria. Findings revealed three overarching themes: guiding frameworks and approaches; strategies to promote accountability to ethics; and making decisions about participation, including considerations for coercion, capacity to consent, surrogate decision-making, and promoting understanding. There were diverse recommendations for ethical research practices, characterized by a lack of consensus, and gaps in knowledge and practice. The authors concluded that systematically studying diverse ethical aspects of research, and identifying and considering the perspectives of persons with intellectual disabilities may represent critical next steps. They suggested that research collaborations between academics and persons with intellectual disabilities present opportunities to further strengthen the ethical integrity of research in the field.
Speaking up about advocacy: findings from a partnership research project
- Authors:
- CHAPMAN Melanie, et al
- Journal article citation:
- British Journal of Learning Disabilities, 40(1), March 2012, pp.71-80.
- Publisher:
- Wiley
Advocacy is about speaking up for yourself and your rights or speaking up for other people. There are 4 types of advocacy: self-advocacy; citizen advocacy; professional advocacy; and peer advocacy. The aim of this research project was to explore people’s understandings of advocacy and to identify gaps in advocacy provision for people with learning disabilities and their families. The study method used a partnership research approach carried out by a research team consisting of people with learning disabilities and people without learning disabilities. Four focus groups were conducted with different stakeholders: 17 people with learning disabilities; 9 family carers; 6 direct support workers; and 6 service managers and commissioners. The findings are organised under the following themes: understandings of advocacy; sources of advocacy; need for advocacy; barriers to advocacy; and other influences on advocacy. The findings show that some people are confused about the different types of advocacy. Advocacy could be improved: by having more information about what support there is; by increasing choice and control in people’s lives; by changing the way services think; and by having advocates who do not work for services and who have time to get to know a person well.
Mutual Support: a model of participatory support by and for people with learning difficulties
- Authors:
- KEYES Sarah E., BRANDON Toby
- Journal article citation:
- British Journal of Learning Disabilities, 40(3), September 2012, pp.222-228.
- Publisher:
- Wiley
Mutual Support is a model of support in which people with learning difficulties, through engaging in meaningful peer support, are empowered to challenge oppression and discrimination. The model was constructed by and for people with learning disabilities through a participatory research process. The research comprised the collection of individual narratives from people with learning difficulties in 2 settings (an independent theatre company and a medium secure unit) where people with learning disabilities were already working together. These narratives were then brought together to form the Mutual Support model. This paper outlines the detailed research process and positions the collective model of support within the self-advocacy and involvement movements. It considers: what mutual support is; who is involved in it; when it happens; how it happens; and what effect it has. Direct quotes from people with learning difficulties illustrate the different aspects of the multifaceted model. The positive effects of Mutual Support are also outlined. These include people being able to participate more fully, ambitions being fulfilled, people who have been mentored becoming mentors themselves, and dignity and respect being reclaimed.
Doing it together (DM Special Issue)
- Authors:
- GARY Butler, et al
- Journal article citation:
- British Journal of Learning Disabilities, 40(2), June 2012, pp.134-142.
- Publisher:
- Wiley
This paper is from a team of four researchers working at St George's University of London, two of which have learning disabilities. It presents two studies using focus groups with people with learning disabilities. One study was concerned with ‘What is it like for people with learning disabilities who have a family or friend with cancer?’, and other study explored ‘How to break bad news to people with learning disabilities?’ The paper reports on how the group worked together as a team. The focus groups involved various methods for data collection such as storytelling, role-playing and voting. Overall, the paper concludes that researchers with learning disabilities enable participants with learning disabilities to discuss difficult subjects in unique ways.