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Quality in services for disabled children and their families: what can theory, policy and research on children's and parents' views tell us?
- Authors:
- MITCHELL Wendy, SLOPER Patricia
- Journal article citation:
- Children and Society, 15(4), September 2001, pp.237-252.
- Publisher:
- Wiley
This article seeks to define 'quality' in services for disabled children and their families. Theoretical models are initially reviewed and then considered in relation to key policy guidelines, empirical data drawing upon parents' and children's experiences of 'quality' in services are presented. Demonstrates the many different levels within the concept of 'quality' and highlights the importance of recognising and respecting that children and parents frequently value different aspects of 'quality'.
Information that informs rather than alienates families with disabled children developing a model of good practice
- Authors:
- MITCHELL Wendy, SLOPER Patricia
- Journal article citation:
- Health and Social Care in the Community, 10(2), March 2002, pp.74-81.
- Publisher:
- Wiley
The provision of information and the importance of keeping families informed is frequently viewed as a significant factor within both the concept of empowerment and the facilitation of enabling and participatory processes for service users and their families. This article looks at how parents would like to receive this information and also discusses the empowering potential of user-friendly information. The article draws on data collected from a focus group discussions with parents caring for children with a range of disabilities or chronic illness. In particular it examines the criteria by which parents judge the quality of information and their ideas as to what constitutes good practice, especially in terms of how information is presented, its content and the way it is delivered. Using these ideas and criteria, the paper begins to develop a model of good information practice that is both three-dimensional and personally interactive.
Carers' experiences of hospital discharge and continuing care in the community
- Authors:
- HEATON Janet, ARKSEY Hilary, SLOPER Patricia
- Journal article citation:
- Health and Social Care in the Community, 7(2), March 1999, pp.91-99.
- Publisher:
- Wiley
This article presents the findings of a study of carers' perspectives on discharge procedures and continuing care arrangements for adults aged 18-65 with physical and complex disabilities. Interviews were conducted with carers of people discharged from younger disabled units (YDUs) and hospital settings. The emphasis carers place on the need to be informed and involved in the discharge planning process is described, and the adequacy of continuing care arrangements from carers' perspectives is examined. The findings of the study raise issues for policy and practice about carers' needs, vis-a-vis patients, to be included as active participants in the discharge planning process.
Having a say in health: involving young people with a chronic illness or physical disability in local health services development
- Authors:
- LIGHTFOOT Jane, SLOPER Patricia
- Journal article citation:
- Children and Society, 17(4), September 2003, pp.277-290.
- Publisher:
- Wiley
Increasing attention is being paid to involving users in local NHS service development, and to involving young people as users in their own right. However, we know little about the views and experiences of young participants, especially those with a chronic illness or physical disability, which could inform more effective approaches to their involvement. The paper reports on research investigating the views of young patients and staff who have taken part in NHS service development projects, and suggests a range of issues for consideration when involving young patients in future.
User-friendly information for families with disabled children: a guide to good practice
- Authors:
- MITCHELL Wendy, SLOPER Patricia
- Publisher:
- Joseph Rowntree Foundation
- Publication year:
- 2000
- Pagination:
- 54p.,bibliog.
- Place of publication:
- York
Report of a project which worked with parents of disabled children and practitioners to draw up criteria for good information provision. These criteria were then used by parents to judge current examples of information, in order to define a model of good practice. Begins with a discussion of research on families' information needs and current policy. The standards for information developed by project participants are then explained with reference to issues of presentation, content, delivery and organisation. Individual information sources, verbal, written and audio-visual, were then appraised and examples of good practice highlighted.