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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.
Services for young people with chronic disorders in their transition from childhood to adult life
- Editors:
- KURTZ Zarrina, HOPKINS Anthony
- Publisher:
- Royal College of Physicians
- Publication year:
- 1996
- Pagination:
- 179p.,bibliogs.
- Place of publication:
- London
Looks at what happens to young people with chronic illness or disability as they make the transition from paediatric to adult services. Uses as examples conditions such as cystic fibrosis, epilepsy and diabetes. The need for multidisciplinary involvement is stressed as is the need to base actions on the wishes and the special needs of the young person. Includes guidelines for good practice in the transfer between services.
Report of the task and finish group on care pathways for long term neurological conditions
- Author:
- WALES. Welsh Assembly Government. Task and Finish Group on Care Pathways for Long Term Neurological Conditions
- Publisher:
- Wales. Welsh Assembly Government
- Publication year:
- 2010
- Pagination:
- 11p.
- Place of publication:
- Cardiff
This report by the Welsh Neuroscience Expert Group Care Pathways sub-group outlines a process for the development of care pathways to support children, young people and adults with long term neurological conditions. The aim of these pathways is to help people with long term neurological conditions manage their condition, maintain independence and achieve the best possible quality of life through an integrated process of education, information sharing, assessment, care planning and service delivery. It is suggested that this would be as delineated in the National Service Framework for Long Term Conditions for England. Areas addressed are: early recognition, diagnosis and treatment; acute care; early specialist rehabilitation; community and longer term rehabilitation; transitions; vocational and educational rehabilitation; equipment and accommodation; personal care and support for the sufferer, their families and carers; palliative care, care within hospital and other health or social care settings; quality assurance, audit and development.
Disabled parents and schools: barriers to parental involvement in children's education
- Author:
- MORRIS Jenny
- Publisher:
- Joseph Rowntree Foundation
- Publication year:
- 2004
- Pagination:
- 43p.
- Place of publication:
- York
This book deals with barriers experienced in terms of dealing with/relationship with schools (physical barriers, attitudinal barriers, inaccessible information etc) . It gives examples of good practice: where e.g. a school or education professional had facilitated a disabled parent to play the role that any parent would expect to play in their child's education. The term 'disabled parents' includes those with physical and/or sensory impairments, learning disabilities, mental health support needs, long-term illness, HIV/AIDs.