Search results for ‘Subject term:"learning disabilities"’ Sort:
Results 1 - 10 of 22
‘It's only right that we get involved’: service-user perspectives on involvement in learning disability services
- Authors:
- HOOLE Lucy, MORGAN Sally
- Journal article citation:
- British Journal of Learning Disabilities, 39(1), March 2011, pp.5-10.
- Publisher:
- Wiley
Promotion of service-user and carer involvement is part of the mainstream policy agenda in health and social care. Much effort has been invested into involving people with learning disabilities in decisions regarding aspects of their lives through advocacy projects and the utilisation of person-centred planning approaches. However, people with learning disabilities continue to be a group of people who are the `most excluded, least independent and most likely to lack control in everyday life'. This article describes a focus group that was conducted to explore the lived experiences of people with learning disabilities as users of services. Thematic analysis revealed three key themes: feelings of unfairness and inequality; experiences of inclusion and power; and future visions. Implications for practice are discussed. Overall, the focus group participants sought greater equality in the decision-making process that affected their everyday lives, breaking down the barriers to meaningful involvement in service development.
Voluntary inspiration
- Author:
- -
- Journal article citation:
- Viewpoint, July 2007, pp.24-25.
- Publisher:
- Mencap/Gateway
This article looks at the experiences of two people with learning disabilities who have secured places on the national volunteering advisory board v20. One of the volunteers talks about what he has learned from his involvement on the board.
Research into practice
- Author:
- MANTHORPE Jill
- Journal article citation:
- Community Care, 2.5.02, 2002, p.47.
- Publisher:
- Reed Business Information
Reports on research that highlights good practice in supporting people with high support needs to make decisions.
Contraceptive choices for women with learning disabilities
- Authors:
- EARLE Sarah, et al
- Publisher:
- Open University. Faculty of Health and Social Care
- Publication year:
- 2015
- Pagination:
- 66
- Place of publication:
- Milton Keynes
This report presents key findings from interviews undertaken with 19 women with learning disabilities about their experiences of contraceptive decision-making. The stories were gathered by an inclusive team of female researchers from the Open University who interviewed women across a range of UK settings.The research looked specifically at why women believe they are receiving contraceptive care, how have women made decisions about what sort of contraception would be useful to them, whether they feel supported to make contraceptive decisions, and the type of support the women have received to understand contraceptive care and its implications. The research found that women’s experiences of contraceptive decision-making vary hugely, as do levels of experience, knowledge and understanding. One key finding reported was that women appreciate staff who will listen carefully to concerns about contraception and relationships and support then to access the best contraception care. Other key findings include that: a few women make very independent choices about sex and contraception and others are supported to make contraceptive choices by family, friends, advocates and health and social care professionals; women are sometimes on contraception because they are not trusted or believed, or because they are thought to be ‘at risk’ of pregnancy and abuse; some women do not receive suitable information or advice to make informed choices and decisions; and some women reported having been forced to use contraception when it was not needed. Drawing on the research finding, the report sets out implications for policy, practice and future research to help support women with learning disabilities to make appropriate contraceptive choices. (Edited publisher abstract)
Living and dying with dignity
- Authors:
- FRIENDLY RESOURCE COMPANY, (Producer)
- Publisher:
- Friendly Resource Company
- Publication year:
- 2011
- Pagination:
- DVD
- Place of publication:
- Rotherham
This DVD presents the case of John, who has difficulties communicating, and who has a terminal illness. It looks at his time in and out of hospital, and the eventual decision for John to stay in his own home with support. It talks about the choices people have in end of life care and encourages people to talk about them to someone they trust. The DVD shows what happened and how the people supporting John were able to make this happen. This resource can be used when supporting people with learning disabilities, families, carers or when carrying out groupwork with people with learning disabilities. The DVD was produced by a team of people with learning disabilities working in partnership with professional film makers and specialist End of Life Care nurses.
Service users' experiences and views of support for decision‐making
- Authors:
- WEBB Paul, et al
- Journal article citation:
- Health and Social Care in the Community, 28(4), 2020, pp.1282-1291.
- Publisher:
- Wiley
This article presents the findings from a qualitative, participatory research project which explored how people with intellectual disabilities and/or mental health problems have, or have not been, supported to make their own decisions. The aim of the research is to help inform how supported decision‐making, as required by Article 12 of the UN Convention on the Rights of Persons with Disabilities, can be effectively operationalised. The project provides an overview of experiences of support as well as identifying which supports are valued. It was conducted between July 2017 and July 2018 and was a partnership between disabled people, service providers and a University. It involved peer researchers interviewing 41 people with mental health problems and/or intellectual disabilities, in community settings, about their experiences and views of support. The key findings include that decision‐making is a central aspect of people's lives. Participants discussed the positive role which decision‐making can have but also how it felt when they were not supported to make their own decisions. Participants said that there were three main things that make decision‐making harder: the type of decision; the role of other people; and what the outcome might be. Time was consistently identified as a very important factor. In terms of support, people said that they would like: practical support including more accessible information; emotional support including someone to talk to; and sometimes the options to choose from. There was very little mention of existing, more formal processes of support such as advance decisions or care planning. The peer researcher aspect of the project was valued by participants. The main implications of the research are for how support for decision‐making should be provided including the need for an individualised approach as the support needed varies across decisions, time and people. (Publisher abstract)
Supported decision making: experiences, approaches and preferences
- Authors:
- DAVIDSON Gavin, et al
- Publishers:
- Praxis Care, Mencap, Queens University Belfast
- Publication year:
- 2018
- Pagination:
- 72
- Place of publication:
- Belfast
This report presents the findings from research which explores how people are supported to make their own decisions. The report includes the results of a review of literature on supported decision making, including different approaches; a review of key guidance; and findings from interviews with 41 people with mental health problems and/ or intellectual disabilities carried out by peer researchers. The interviews provided an in-depth understanding of people’s experiences of support for decision making and their ideas on how decision making should be supported in the future. The research was funded by the Disability Research on Independent Living and Learning (DRILL) programme and was led by Praxis Care in partnership with Mencap NI and Queen’s University Belfast. The findings identified three things that participants felt make decision making harder: the type of decision; the role of other people; and what the outcome might be. Time was also identified as an important factor. In terms of support, people said they would like: practical support including more accessible information; emotional support including someone to talk to; and sometimes the options to choose from. The report makes a number of recommendations for how support for decision making should be provided but also specifically for how these findings might help to inform how the new support principle in the Mental Capacity Act (Northern Ireland) 2016 should be implemented in practice. (Edited publisher abstract)
Does it matter? Decision-making by people with learning disabilities
- Authors:
- PEOPLE FIRST (SCOTLAND), ANIMATE
- Publisher:
- Animate
- Publication year:
- 2017
- Pagination:
- 84
- Place of publication:
- Glasgow
This research examines whether supported decision making for people with learning disabilities offers a practical and safe alternative to substitute decision following a guardianship order. It aims to present their views within the current debate about the need to revise Scotland’s incapacity legislation. Peer researchers conducted interviews with 128 people who had a learning disability about their experiences of decision making. Overall, participants felt making decisions for themselves was important, emphasising the need to have choice and the freedom to be independent. Good practice examples of supported decision making are included. However, participants reported that they commonly experienced decisions being made about them without people asking, which left many participants feeling powerless and angry. The report also discusses the barriers to people with learning disabilities taking greater control of their decision making; challenges within the current guardianship system in Scotland; and the challenges to delivering supported decision making. The findings suggest that supported decision-making for people with learning disabilities can offer a safe and realistic alternative to substitute decision-making, but requires a significant change in mindsets as to the rights, resources and risks involved. (Edited publisher abstract)
Never mind what I like, it's who I am that matters:an investigation into social pedagogy as a method to enhance the involvement of young people with learning disabilities
- Authors:
- CARTER Sid, et al
- Journal article citation:
- British Journal of Learning Disabilities, 41(4), 2013, pp.312-319.
- Publisher:
- Wiley
The involvement of children and young people with learning disabilities in the decision-making of the services they use is recognised as an essential principle. However, implementation of this principle has encountered two main obstacles. One obstacle is that meaningful involvement has largely been subsumed by a provider-driven consumerist agenda. A second obstacle is the lack of methods to gain feedback that take account of an individual's cognitive and linguistic impairments. This article reports on the use of the social pedagogy approach to attempt to overcome these obstacles. The ideas were used to run a group to involve young people with learning disabilities who used short break services. The findings show that social pedagogy, which emphasises a balance between ‘head, heart and hands’, provided a means to establish egalitarian relationships with young people with learning disabilities. Thus, social pedagogy was found to be effective in enhancing involvement in the context of a person-centred approach. (Publisher abstract)
Involve me: practical guide: how to involve people with profound and multiple learning disabilities (PMLD) in decision-making and consultation
- Authors:
- MENCAP, BRITISH INSTITUTE OF LEARNING DISABILITIES, RENTON FOUNDATION
- Publisher:
- Mencap
- Publication year:
- 2011
- Pagination:
- 72p.
- Place of publication:
- London
People with profound and multiple learning disabilities are some of the most excluded in society. The Involve Me project focuses on how to involve them in decision-making and consultation. This guide to how to involve people with profound and multiple learning disabilities is partly based on an independent evaluation of the Involve Me project. It includes a description of the 4 Involve Me sites and approaches to involvement, and a summary of recommendations from the evaluation. The guide covers involvement in choice and decision-making, capacity and consent for people with profound and multiple learning disabilities, the key Involve Me messages, and information about the accompanying DVD resource which contains information and materials to support the Involve Me key messages.