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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.
Service support for children with a chronic illness or physical disability attending mainstreams schools
- Authors:
- LIGHTFOOT Jane, MUKHERJEE Suzanne, SLOPER Patricia
- Publisher:
- University of York. Social Policy Research Unit
- Publication year:
- 1998
- Pagination:
- 183p.,bibliog.
- Place of publication:
- York
Aims to identify needs for NHS support for schools as expressed by children with special health needs, their parents and teachers, and to make recommendations for good practice. Commences with a review of relevant literature. Examines results of focus group discussions, which raised issues relating to school absence, exclusion from school life, support from peers and teachers, and medical care. Finally reports on conclusions arising from workshops with managers and professionals from education and health care.
Improving communication between health and education for children with chronic illness or physical disability
- Authors:
- MUKHERJEE Suzanne, LIGHTFOOT Jane, SLOPER Patricia
- Publisher:
- University of York. Social Policy Research Unit
- Publication year:
- 2000
- Pagination:
- 164p.
- Place of publication:
- York
Report of project based in York intended to improve communication between health and education staff about children with a chronic illness and physical disability. Health and education staff, parents and children were surveyed and an action plan for creating better systems for communication drawn up.
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.