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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'.
Participation of disabled children and young people in decision making within social services departments: A survey of current and recent activities in England
- Authors:
- FRANKLIN Anita, SLOPER Patricia
- Journal article citation:
- British Journal of Social Work, 36(5), June 2006, pp.723-741.
- Publisher:
- Oxford University Press
A survey of all social services departments in England was undertaken in order to identify and investigate current work concerning the participation of disabled children within decision making regarding their own care and in service development. Developing a culture of, and good practice in, children’s participation is integral to government policy. Results demonstrate that disabled children are being involved in a range of decision-making areas; however, participation is not yet embedded or sustained across all social services departments, and the involvement of disabled children at a higher strategic level is still rare. The participation of disabled children needs further development including more evidence on which factors can support and promote disabled children’s effective participation.
Involving children and young people with a chronic illness or physical disability in local decisions about health services development: phase one: report on national survey of health authorities and NHS trusts
- Authors:
- LIGHTFOOT Jane, SLOPER Patricia
- Publisher:
- University of York. Social Policy Research Unit
- Publication year:
- 2001
- Pagination:
- 57p.
- Place of publication:
- York
This report describes the first phase of a research project funded by the Department of Health's Health in Partnership Initiative. The overall aim of the Initiative is to contribute to the knowledge base for lay involvement in health care decision making. This study is investigates the involvement of children and young people, in particular those who have a chronic illness or physical disability, since this is a growing group and includes heavy and long-term users of a wide range of health services. The focus of the research is on children's involvement in decision making about service development, as opposed to decisions about their own treatment, care and/or support.
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.
Unlocking key working: an analysis and evaluation of key worker services for families with disabled children
- Authors:
- MUKHERJEE Suzanne, BERESFORD Bryony, SLOPER Patricia
- Publisher:
- Policy Press
- Publication year:
- 1999
- Pagination:
- 85p.,bibliog.
- Place of publication:
- Bristol
Report based on a project in which multi agency key worker services for parents with a disabled child were planned, developed and implemented in two local areas. Managers and practitioners worked in partnership with the research team to observe, monitor and evaluate this 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.