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Life as a young 'ventilator dependent' person
- Author:
- NOYES Jane
- Journal article citation:
- Journal of Social Work Practice, 13(2), November 1999, pp.177-190.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
This article draws on a study exploring young 'ventilator dependent' peoples' views and experiences of the care and services they receive. They described their lives as being characterised by discrimination, poorly organised and inadequate services, violation of their human rights, social exclusion and in many cases inadequate education. From the findings of this study a number of questions are posed on behalf of the young people for commissioners and providers of services to address.
Voices and choices: young people who use assisted ventilation; their health and social care, and education
- Author:
- NOYES Jane
- Publisher:
- Stationery Office
- Publication year:
- 1999
- Pagination:
- 105p.,list of orgs.,bibliog.
- Place of publication:
- London
Examines the experience of being a young person dependent on a ventilator. Goes on to look at: the policy context; children's rights; the research study and the young people and their families who participated; and who the report is aimed at. Chapter two is on young people in hospital and looks at: NHS service provision; social services; rehabilitation; play; education; families; memories of hospitalisation; long term impact; and good practice. Chapter three covers getting home from hospital, including: discharge planning; involving young people; working with parents; multi agency working; care packages; adapting the family home; complaining; and good practice. Chapter four is on living at home and deals with: coming home; emergency planning; employed carers; coordinating care and negotiating boundaries; staying healthy; friends and hobbies; and equipment and supplies. Chapter five looks at starting school and the support needed. Chapter six is on growing up, including young people's views and experiences, sexuality, and the role of parents. Chapter seven focuses on young people who do not live with their parents. Concludes with a chapter on rights, social security, and education, leisure and cultural activities.