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Book Full text available online for free

Co-production in transforming care: checking if co-production is happening

Author:
LOCAL GOVERNMENT ASSOCIATION
Publisher:
Local Government Association
Publication year:
2017
Pagination:
17
Place of publication:
London

This guide explains what co-production means, how to check if co-production is happening, and what Transforming Care Partnerships can do to support co-production. Transforming Care Partnerships are the groups of people working together to improve services and support for people with a learning disability and people with autism who display behaviour that challenges. The guide suggests that key indicators that co-production is happening include: there is a co-produced policy on co-production that shows the way everyone will work; there is a clear plan on co-production that has been co-produced; how the Transforming Care Partnership works is built on the co-production principles; all communication is open and easy to understand; and there is evidence of a ‘shift in power’ to people and families from professionals. (Edited publisher abstract)

Journal article

Research with and by people with learning disabilities

Author:
DURELL Shirley
Journal article citation:
Nursing Times, 112(6/7), 2016, pp.15-18.
Publisher:
Nursing Times

People with learning disabilities are not actively involved in research, but inclusive studies can generate findings that are representative of this group of people. This article explores the development of inclusive learning disability research by tracing its background and influences, identifying key characteristics and highlighting some of the challenges in its application. It demonstrates how inclusive research can give people with learning disabilities a voice that will help to inform practice. (Edited publisher abstract)

Journal article

The power of difference in inclusive research

Author:
WOELDERS Susan
Journal article citation:
Disability and Society, 30(4), 2015, pp.528-542.
Publisher:
Taylor and Francis,

Inclusive research involves people with intellectual disabilities actively and strives for empowerment and normalisation. Less is written about the power dynamics in a research team consisting of researchers and people with intellectual disabilities and the possible value of such collaboration. In this auto-ethnography the authors reflect on these aspects and the challenges along the way. They conclude that striving for normalisation can be paralysing; ‘doing the same’ is not always possible and can be disempowering for all members of the research team. Acknowledging differences and uniqueness enriches research outcomes and makes us reflect on our own, sometimes rigid, academic frameworks. (Edited publisher abstract)

Journal article

Deciding what to research: an overview of a participatory workshop

Authors:
NORTHWAY Ruth, et al
Journal article citation:
British Journal of Learning Disabilities, 42(4), 2014, pp.323-327.
Publisher:
Wiley-Blackwell

This paper discusses how a participatory workshop with people with learning disabilities was held to try and identify priority areas for research. It is hoped that by sharing these experiences, other people will be encouraged to try similar approaches. (Edited publisher abstract)

Journal article

Oxleas “can you understand it?” group

Author:
CAN YOU UNDERSTAND IT GROUP
Journal article citation:
Advances in Mental Health and Intellectual Disabilities, 8(4), 2014, pp.268-270.
Publisher:
Emerald

Purpose: This paper describes the development and work of the “Can you understand it?” group, which supports services in developing accessible information for people with intellectual disabilities. Design/methodology/approach: Members describe their experiences of working with the “Can you understand it?” group. Findings: Group members found the group to be a positive experience. They report that they have supported a range of services in making information easier for people with intellectual disabilities to understand. Originality/value: This paper reinforces the importance of making information accessible to people with intellectual disabilities and that people with intellectual disabilities themselves should be involved in the process to assure quality. (Edited publisher abstract)

Journal article

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.

Journal article

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.

Journal article

People with learning disabilities participating in research as members of a steering group: a research report

Author:
BOLLARD Martin
Journal article citation:
Mental Health and Learning Disabilities Research and Practice, 7(2), Autumn 2010, pp.174-183.
Publisher:
South West Yorkshire Mental Health NHS Trust and University of Huddersfield

This paper reports on a 14 month project in which people with learning disabilities participated in research as steering group members and interview informants. The main aim of the research was to explore the viewpoints of people with learning disabilities regarding team-working and how this user experience could inform health and social care students’ understanding of team-working. Four individuals, two men and two women formed the steering group and two additional individuals took part in interviews. All the volunteers in the steering group had a mild learning disability and were able to recall their own experiences and relate them to the purpose of the study. The participants helped oversee the research and also contributed as informants. Their ideas on team-working helped develop a questionnaire tool on team-working used at a later stage of research with students. The key themes that emerged from the steering group meetings and interviews are reported. The participants felt strongly that students needed to know about team-working and have ideas about what it is like having a learning disability. They were able to recognise that students at different stages of their training needed to learn different things. The perspectives on team working from participants such as working together, listening and being respectful, highlighted the benefits of team working.

Journal article

Staying on TRAC

Authors:
JONES Victoria, et al
Journal article citation:
Learning Disability Today, April 2010, pp.34-36.
Publisher:
Pavilion
Place of publication:
Hove

People with learning disabilities are acknowledged as a particularly vulnerable group, with estimates of the number who have been victims of abuse ranging from 30-50%. However, research has often failed to ask people with learning disabilities what they think and feel about abuse. Participatory research aims to give power back to disabled people and bring about change both in research and wider society. It involves people with learning disabilities working as co-researchers and being actively involved in all stages of the research process. This article describes a planned 3-year study by the Teaching and Research Advisory Committee (TRAC) at the University of Glamorgan with their partners Rhondda Cynon Taff People First and New Pathways. The planned study will explore what people with learning disabilities understand by abuse, what help and support they need to keep themselves safe from abuse and, if someone has been abused, what are the best ways to provide support. The project will actively involve people with learning disabilities at all stages of the research process, with 3 people with learning disabilities employed as co-researchers. The information gathered from the study will be used to directly inform the development of counselling provision for people with learning disabilities.

Book Full text available online for free

How to make information accessible: a guide to producing easy read documents

Author:
CHANGE
Publisher:
Change
Publication year:
2009
Pagination:
46p.
Place of publication:
Leeds

This guidance produced by the National Equality Partnership and CHANGE, a national organisation led by disabled people, aims to make written information accessible to those who may find reading and writing difficult. Central to this is the belief that people who have learning difficulties have the expertise and knowledge to prepare such a document, and have done so with this guide. Here, accessible information means easy words and pictures, a style of language developed by people with learning disabilities over the past 15 years. Characterised by writing in short, simple sentences without jargon or hard words, clear and easy to understand pictures are used to support words, with an added value of helping those who do not have English as a first language. It takes time and money to create information to the easy words and pictures standard, so it is important to choose carefully which documents to use. It is suggested that some information could be made more accessible by the use of other, cheaper methods such as multimedia. The authors define jargon and hard words, detail laws such as the 1995 Disability Discrimination Act (DDA) and the 2006 Disability Equality Duty (DED) and advise on involving people with learning disabilities on how to improve accessibility and presentation of documents.  Presented throughout, in the style of easy words and pictures, practical advice is given on how to prepare a document with a checklist and examples of good practice concluding the text.

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