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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.
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.