Children and young people requiring home assisted ventilation in the south of England: Incidence, receipt of care support and components of the care package

Children and Society

Volumn 18, Issue 3, 2004, Pages 207-217

  While, Alison E ^a   Cockett, Andrea M ^a   Lewis, Samantha ^a  

^a KING'S COLLEGE LONDON   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

EID: 3042600729     PISSN: 09510605     EISSN: None     Source Type: Journal    
DOI: 10.1002/chi.792     Document Type: Review

References (41)

1. Barriball K, Christian S, While A, Bergen A. 1996. The telephone survey method: a discussion paper. Journal of Advanced Nursing 24:115-121.
2. Beecham J, Chadwick O, Fidan D, Bernard S. 2002. Children with severe learning disabilities: needs, services and costs. Children & Society 16:168-181.
3. Beresford B. 1995. Expert opinions: a national survey of parents caring for a severely disabled child. Social Policy Research Unit: University of York.
4. Boosfield B, O'Toole M. 2000. Technology dependent children: transition from hospital to home. Paediatric Nursing 12(6): 20-22.
5. British Paediatric Association. 1993. Report of a Multidisciplinary Working Party on Paediatric Intensive Care. BPA: London.
6. Department of Health. 1991. Welfare of Children and Young People in Hospital. HMSO: London.
7. Department of Health. 1998. Partnership in action: new opportunities for joint working between health and social services. Stationery Office: London.
8. Department of Health. 1999. Our healthier nation: saving lives. Stationery Office: London.
9. Department of Health. 2000a. The NHS Plan. DOH: London.
10. Department of Health. 2000b. Carers and Disabled Children Act 2000 explanatory notes. Stationery Office: London.
11. Fraser J, Mok Q, Tasker R. 1997. Survey of occupancy of paediatric intensive care units by children who are dependent on ventilators. BMJ 315:347-348.
12. Glass C, Boling P, Gammon S. 1996. Collaborative support for caregivers of individuals beginning mechanical ventilation at home. Critical Care Nurse 16(4): 67-71.
13. Glendinning C, Kirk S, Guiffrida A, Lawton D. 2001. Technology-dependent children in the community: definitions, numbers and costs. Child: Care, Health and Development 27: 321-334.
14. Goodinge S. 1998. Removing barriers from disabled children: inspection of services to disabled children and their families. SSI Social Care Group. DOH: London.
15. Hunter D. 1997. Desperately seeking solutions rationing health care. Addison Wesley: New York.
16. Jardine E, Wallis C. 1998. Core guidelines for the discharge home of the child on long term assisted ventilation in the United Kingdom. Thorax 53: 762-767.
17. Jardine E, O'Toole M, Paton J, Wallis C. 1999. Current status of long-term ventilation of children in the United Kingdom: questionnaire survey. BMJ 318: 295-299.
18. Kirk S. 1998. Families' experiences of caring at home for a technology-dependent child: a review of the literature. Child: Care, Health and Development 24:101-114.
19. Kirk S. 1999a. Caring for technology-dependent children at home. British Journal of Community Nursing 4: 390-394.
20. Kirk S. 1999b. Caring for children with specialized health care needs in the community: the challenges for primary care. Health and Social Care in the Community 7: 350-357.
21. Kirk S, Glendinning C. 1999. Supporting parents caring for a technology-dependent child. National Primary Care Research and Development Centre, University of Manchester.
22. Maynard L, Barclay S, Palmer R, Todd C, Vickers D. 1996. Families in need: the needs of families caring for children with life threatening illnesses in Cambridge Health District. Lifespan Healthcare NHS Trust: Cambridge.
23. National Health Service Executive. 1996. Child health in the community: a guide to good practice. DOH: London.
24. Noyes J. 1999a. 'Voices and Choices': young people who use assisted ventilation: their health, social care and education. Stationery Office: London.
25. Noyes J. 1999b. The views and experiences of young people who use assisted ventilation. The Joseph Rowntree Foundation: York.
26. Noyes J. 2000. Enabling young 'ventilator-dependent' people to express their views and experiences of their care in hospital. Journal of Advanced Nursing 31:1206-1215.
27. Noyes J, Hartmann H, Samuels M, Southall D. 1999. The experiences and views of parents who care for ventilator-dependent children, Journal of Clinical Nursing 8: 440-450.
28. Read J. 2000. Disability, the family and society: listening to mothers. Open University: Buckingham.
29. Royal College of Nursing. 2000. Directory of community nursing services. RCN Paediatric Community Nurses Forum: London.
30. Sloper P. 1999. Models of service support for parents of disabled children. What do we know? What do we need to know? Child: Care, Health and Development 25: 85-99.
31. Stutts A. 1994. Selected outcomes of technology dependent children receiving homecare and prescribed child care services. Pediatrie Nursing 20: 501-507.
32. Sudbery J, Noyes J. 1999. Voices and choices of children and young people who use assisted ventilation. Bibliography and analysis of the literature. Joseph Rowntree Foundation: Salford.
33. Taanila A, Syrjala L, Kokkonen J, Jarvelin M-R. 2002. Coping of parents with physically and/or intellectually disabled children. Child: Care, Health and Development 28: 73-86.
34. Tak RK, McCubbin M. 2002. Family stress, perceived social support and coping following the diagnosis of a child's congenital heart disease. Journal of Advanced Nursing 39:190-198.
35. Thomas V, Ellison K, Howell E, Winters K. 1992. Caring for the person receiving ventilatory support at home: caregivers' needs and involvement. Heart and Lung 21:180-186.
36. Townsley R, Robinson C. 1999. What rights for disabled children? Home enterai tube feeding in the community. Children & Society 13: 48-60.
37. Ward T. 2000. Care of the child requiring long-term ventilation in Williams C and Asquith J Paediatric Intensive Care Nursing. Churchill Livingstone: London.
38. Warner L, Wexler S. 1998. Eight hours a day and taken for granted. The Princess Royal Trust for Carers: London.
39. While A, Dyson E. 2000. Characteristics of paediatric home care provision: the two dominant models in England. Child: Care, Health and Development 26: 263-276.
40. While A, Citone C, Cornish J. 1996. A study of the needs and provisions for families caring for children with life-limiting incurable disorders. Report to the Department of Health: King's College London.
41. Youngblut J, Fletley Brennan P, Swegart L. 1994. Families with medically fragile children: an exploratory study. Pediatric Nursing 20: 463-468.