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Journal article

Information that informs rather than alienates families with disabled children developing a model of good practice

Journal article citation:
Health and Social Care in the Community, 10(2), March 2002, pp.74-81.

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.


User-friendly information for families with disabled children: a guide to good practice

Joseph Rowntree Foundation
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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.

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