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Book

Lifelines: an account of the life experiences of seven people with a mental handicap who used the NIMROD service

Editors:
HUMPHREYS Simone, EVANS Gerry, TODD Stuart
Publisher:
Kings Fund
Publication year:
1987
Pagination:
137p.
Place of publication:
London

(Uses a case-study approach to illustrate the experiences of seven users of the NIMROD service.

Journal article

Reflecting on change: consumers' views of the impact of the All-Wales strategy

Authors:
TODD Stuart, et al
Journal article citation:
Mental Handicap, 21(4), December 1993, pp.128-136.
Publisher:
British Institute of Mental Handicap

Reports on the views of users of services for people with learning difficulties in Wales living in the community.

Book

Caring for people with learning disabilities who are dying

Authors:
BLACKMAN Noelle, TODD Stuart
Publisher:
Worth
Publication year:
2005
Pagination:
53p.
Place of publication:
London

This book is about providing good end-of-life care in learning disabilities supported living services. Death and dying are parts of our lives that resonate with meaning and emotion. This account provides is a practical introduction.

Journal article

A strategy for all seasons

Authors:
FELCE David, BEYER Steve, TODD Stuart
Journal article citation:
Community Care, 3.8.95, 1995, pp.22-23.
Publisher:
Reed Business Information

Looks back at the history of a planned, integrated approach to learning difficulties and ask what the future holds.

Journal article

‘Being there’: the experiences of staff in dealing with matters of dying and death in services for people with intellectual disabilitie

Author:
TODD Stuart
Journal article citation:
Journal of Applied Research in Intellectual Disabilities, 26(3), 2013, pp.215-230.
Publisher:
Wiley-Blackwell

Research on staffed housing for people with intellectual disability has identified the challenges in achieving positive quality of life outcomes. However, a less well considered dimension of such services is that they are places of living and dying. This paper looks at the experiences of staff in dealing with issues of death and dying. In depth qualitative interviews were held with 22 staff in 5 different providers and who had experienced, in total, 27 deaths of people with intellectual disability. The data highlight that staff felt providing a good quality of care at the end of life was an important but unrecognised dimension of their work. This work could be broken down into several different phases, dying, death and beyond death. Bad deaths were felt to be those deaths which prevented staff from ‘being there’ with individuals over those phases. (Publisher abstract)

Journal article

Learning Disability and Autism Network (LDAN)

Author:
TODD Stuart
Journal article citation:
Llais, 83, Spring 2007, pp.15-17.
Publisher:
Learning Disability Wales

The re-organisation and re-structuring of research in Wales and the creation of CRC Cymru has given rise to a new Learning Disability and Autism Network. The author discusses the developments, and looks at how this initiative could stimulate increased dialogue and discussion about learning disability research.

Journal article

When it comes to dying, what difference does learning disability make?

Author:
TODD Stuart
Journal article citation:
Llais, 74, Autumn 2004, pp.6-10.
Publisher:
Learning Disability Wales

Outlines a research study on the effects of the death of a person with learning disability on staff and parents and the support services did or did not provide.

Journal article

Death does not become us: the absence of death and dying in intellectual disability research

Author:
TODD Stuart
Journal article citation:
Journal of Gerontological Social Work, 38(1/2), 2002, pp.225-239.
Publisher:
Taylor and Francis
Place of publication:
Philadelphia, USA

The social issues of death, dying and bereavement represent important but neglected research areas, and such issues need attention both for practical reform and for deciphering what living with intellectual disability entails. The difficulties which life poses for people with intellectual disabilities may well persist in the times before and after death. As research issues they offer not only potential practical significance, but also a means of determining the social status and value of people with intellectual disabilities. This paper reviews the issues of death and dying from the viewpoint of sociological research and seeks to identify the ways death and dying have been treated within the research literature on living with intellectual disability. It is suggested that these issues have been discounted with some important consequences for the way intellectualdisability is perceived.

Journal article

Maternal employment and family responsibilities: the perspectives of mothers and children with intellectual disabilities

Authors:
SHEARN Julia, TODD Stuart
Journal article citation:
Journal of Applied Research in Intellectual Disabilities, 13(3), 2000, pp.109-131.
Publisher:
Wiley-Blackwell

Examines the nature of the restrictions which affect the employment participation of mothers of children with learning disabilities and explores the meaning work has for them. The data were derived from qualitative interviews with 18 mothers of children with disabilities aged between 5 and 15 years. These mothers found employment difficult. They encountered unusual time demands, and a lack of adequate and affordable child care. The mothers felt that they were on the periphery of society with little release from the pressures of caring. Mothers who had part-time jobs often did poorly paid work of low status, thereby encountering few opportunities to use their skills and abilities to the full. Those who attempted a full-time job experienced stress from the dual demands of home and work, and from a fear that they were failing as mothers.

Journal article

Family dilemmas and secrets: parents' disclosure of information to their adult offspring with learning disabilities

Authors:
TODD Stuart, SHEARN Julia
Journal article citation:
Disability and Society, 12(3), June 1997, pp.341-366.
Publisher:
Taylor and Francis,

Describes the role parents play in providing knowledge of learning disability to their adult offspring with learning disabilities. Data were derived from an in-depth qualitative study of the nature of parent-adult-offspring co-residence. The findings reveal that while parents recognised and had to deal with the stigma learning disability exerted in their own lives, they had taken steps to prevent their adult offspring from having to deal with similar difficulties. It is argued that it remains the case that learning disability is treated as a stigmatised identity and as such is rendered invisible through the strategic control of information. However, findings point towards the conclusion that there has been a cultural reversal in how this process is managed.

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