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Deconstructing the co-production ideal: dilemmas of knowledge and representation in a co-design project with people with intellectual disabilities
- Authors:
- CHINN Deborah, PELLETIER Caroline
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 45(4), 2020, pp.326-336.
- Publisher:
- Taylor and Francis
Background: The co-production concept holds out the promise of forging new relationships between professionals and service users with intellectual disabilities. However, little empirical research explores the embodied practices of these projects occasion. We identify two key tensions intrinsic to such projects; the tension between expert/professional knowledge and lay/experiential knowledge, and between co-producers as different from or typical of the public they are representing. Methods: We explored how these tensions were manifested and responded to in ongoing interactions by analysing video recordings of co-design groups where people with intellectual disabilities engaged in the production of Easy Read materials. Results: We noticed the instability of participants’ claims to expert/professional knowledge and the challenges of attending to and mobilising participants’ experiential knowledge within the constraints of the group task. Conclusions: Interactional dynamics were managed to preserve consensus and homogeneity within the groups, with the potential for reinforcing a limited identity associated with “intellectual disability.” (Edited publisher abstract)
A search for meaning: telling your life with learning disabilities
- Authors:
- HORN Jaime Helena, MOSS Duncan
- Journal article citation:
- British Journal of Learning Disabilities, 43(3), 2015, pp.178-185.
- Publisher:
- Wiley
Research has identified the collective experiences of oppression, stigma and isolation in the lives of people with learning disabilities. Against the backdrop of social and cultural processes that shape and limit the life experiences of people with learning disabilities, the authors are interested in how the individual develops a sense of self and identity. The aim is to further understand the subjective world of one woman with learning disabilities, drawing attention to how meaning about herself and her world has been constructed. The authors present and analyse one woman's life story, adopting a narrative and participatory research approach, with its focus on personal experience, whilst making links between the individual and social world. (Publisher abstract)
Participatory research, people with intellectual disabilities and ethical approval: making reasonable adjustments to enable participation
- Authors:
- NORTHWAY Ruth, HOWARTH Joyce
- Journal article citation:
- Journal of Clinical Nursing, 24(3-4), 2015, pp.573-581.
- Publisher:
- John Wiley and Sons
Aims and objectives: The aim of this paper is to explore how making reasonable adjustments to the process of securing ethical approval for research can facilitate the meaningful involvement of people with intellectual disabilities as members of a research team. This is achieved through critical reflection upon the approach taken within one participatory research study whose objective was to explore how people with intellectual disabilities understand abuse. Background: Internationally participatory research studies (in which active involvement of community members in all stages of the research process is sought) are becoming increasingly common in the context of health care and, more specifically, within research involving people with intellectual disabilities. However, whilst it is acknowledged that participatory research gives rise to specific ethical challenges, how (or if) involvement in securing ethical approval is facilitated, is not discussed in most research reports. The significance of this paper is that it seeks to address this gap by exploring how meaningful participation can be promoted by making reasonable adjustments. Methods: Within the study, the research team worked in collaboration with the ethics committee to identify potential barriers that could prevent the participation of members of the research team who had intellectual disabilities. Reasonable adjustments (such as redesigning forms) were made to the processes involved in securing ethical approval. Conclusions: This study demonstrated that it is possible to ensure that ethical standards are upheld and the requirements of ethics committees met whilst also facilitating the meaningful involvement of people with intellectual disabilities. Relevance to clinical practice: The reasonable adjustments approach explored within this paper can be translated into the context of clinical practice: making changes to the way that services are delivered can promote greater involvement of people with intellectual disabilities in their own health care. (Publisher abstract)
Social work with marginalised people who have a mild or borderline intellectual disability: practicing gentleness and encouraging hope
- Authors:
- ELLEM Kathy, et al
- Journal article citation:
- Australian Social Work, 66(1), 2013, pp.56-71.
- Publisher:
- Taylor and Francis
People with mild or borderline intellectual disabilities are a group of people who usually do not meet the eligibility criteria for specialist disability services. They may traverse many services, often entering, exiting, and returning to the same service providers with few positive results. This article explores the practice approach of the Meryton Association, a medium-sized non-government agency located in Brisbane, Australia. The Association provides social work support to people with mild to borderline intellectual disabilities, actively assisting this group to build relationships, resources, knowledge, and autonomy in their everyday lives. Using qualitative in-depth interviews with 11 Meryton Association staff and analysis of Meryton Association policy and practice documents, the challenges and opportunities of using this practice approach are documented. The authors propose that specialist services are needed that use a developmental approach, stress the importance of relationship, and the need to practice gentleness and hope in social worker-client interaction.
Views and experiences of people with learning disability in relation to policing arrangements in Northern Ireland
- Author:
- SOCIAL MARKET RESEARCH
- Publisher:
- Police Ombudsman for Northern Ireland; Northern Ireland Policing Board
- Publication year:
- 2011
- Pagination:
- 251p.
- Place of publication:
- Belfast
The report is the outcome of a major research project co-funded by the Police Ombudsman’s Office and the Policing Board into the issues faced by people with learning disabilities when dealing with the police and policing organisations. Almost 300 people with learning disabilities, along with key workers and organisations in the learning disability sector, and representatives of the police, policing organisations and criminal justice bodies were consulted during the project. The study found that people with learning disabilities had largely positive views and experiences of the police. But it also found that many instances of bullying and harassment of people with learning disabilities were likely to go unreported because the victims did not realise that they had been a victim of crime, or were unwilling to report it. The report makes a total of 24 recommendations to help ensure that the police and policing organisations respond appropriately to the needs of people with learning disabilities, and also to help combat disability hate crime.
Getting the right result
- Author:
- -
- Journal article citation:
- Learning Disability Today, June 2011, pp.34-35.
- Publisher:
- Pavilion
- Place of publication:
- Hove
CMG and Pure Innovations is a national non-for-profit employment scheme that helps people with learning disabilities and mental health needs to get into work. This article describes how the scheme worked with and supported one of their clients, who had mild learning disabilities and mental health needs, so he was able to secure a permanent job.
Reflections on a participatory project: the rewards and challenges for the lead researchers
- Authors:
- CONDER Jennifer, MILNER Paul, MIRFIN-VEITCH Brigit
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 36(1), March 2011, pp.39-48.
- Publisher:
- Taylor and Francis
Participatory research offers potential for people with an intellectual disability to have an active voice in service provision. Using the example of a project to develop a quality of life tool in New Zealand, this paper aims to address 3 issues raised in a 2004 article by Ramcharan, Grant, and Flynn in relation to participation of people with an intellectual disability in research: lack of detail about level of participation, how people have been supported in their participation, and the extent to which participation in the project has changed the lives of the participants. The article includes a brief overview of the project, and presents a discussion drawn from reflections on the research process by the researchers. The researchers worked with people with an intellectual disability who were service users as co-researchers or participants in choosing indicators of quality of life. The article discusses the participation of the 6 co-researchers and 95 participants, the support provided, and whether co-researchers' and participants' lives were changed. The authors note that although the project achieved its goal of people with intellectual disability authoring a quality of life tool, there was a variation in participants' contribution, and the financial and practical support of the contracting organisation was crucial to enabling people to take part.
In control
- Author:
- -
- Journal article citation:
- Viewpoint, 114, January 2010, pp.26-27.
- Publisher:
- Mencap/Gateway
Ellen Goodey, who has a learning disability, briefly describes how she uses her individual budget to help her get the support she needs to live the life she wants. Two years ago she began to use her budget to hire a job coach who has helped her establish herself as a performing artist and disability inclusion trainer. The job coach helps her to think about what she wants to do and to make the connections. He also ensures that she gets paid as a professional for the work she does, as people often assume she will work for free.
Calling the shots
- Author:
- BALDWIN Michele
- Journal article citation:
- Learning Disability Today, 9(5), July 2009, pp.26-27.
- Publisher:
- Pavilion
- Place of publication:
- Hove
A three year project run by the Association for Real Change (ARC) has trained 12 people with learning disabilities to become trainers. The article summarises the training and learning points from the project.
A guide to implementing assistive technology for people with learning disabilities
- Authors:
- BEYER Stephen, PERRY Jonathan, MEEK Andrea
- Publisher:
- Home Farm Trust
- Publication year:
- 2009
- Pagination:
- 50p.
- Place of publication:
- Bristol
This handbook has been produced for for organisations and families who wish to implement person centred technology. The guide expertly lays out the case for assistive technology and telecare, putting it in context - how and why it should exist alongside existing services - and provides a clear guide to implementation.