Transitions in the lives of young people with complex healthcare needs

Child: Care, Health and Development

Volumn 34, Issue 5, 2008, Pages 567-575

  Kirk, S ^a  

^a UNIVERSITY OF MANCHESTER   (United Kingdom)

Author keywords

Chronic illness; Complex healthcare needs; Disabled children; Qualitative; Self care; Transition

Indexed keywords

ADOLESCENT; ADULT; ARTICLE; ATTITUDE TO CHANGE; ATTITUDE TO ILLNESS; CHILD BEHAVIOR; CHILD HEALTH CARE; CLINICAL ARTICLE; CONTROLLED STUDY; CULTURAL FACTOR; DATA COLLECTION METHOD; FEMALE; GROUNDED THEORY; HEALTH CARE NEED; HEALTH SERVICE; HUMAN; HUMAN RELATION; INDEPENDENCE; INTERVIEW; MALE; MEDICAL DECISION MAKING; MEDICAL SPECIALIST; PARENTAL BEHAVIOR; PRIORITY JOURNAL; QUALITATIVE ANALYSIS; SCHOOL CHILD; SELF CARE;

ADOLESCENT; ADULT; ATTITUDE TO HEALTH; CHILD; CHILD HEALTH SERVICES; CONTINUITY OF PATIENT CARE; DISABLED PERSONS; ENGLAND; FEMALE; HUMANS; LIFE CHANGE EVENTS; MALE; PATIENT TRANSFER; PROFESSIONAL-PATIENT RELATIONS; QUESTIONNAIRES; SELF CARE; STRESS, PSYCHOLOGICAL;

EID: 49349094882     PISSN: 03051862     EISSN: 13652214     Source Type: Journal    
DOI: 10.1111/j.1365-2214.2008.00862.x     Document Type: Article

References (48)

1. Abbott, D., Townsley, R. & Watson, D. (2005) Multi-agency working in services for disabled children: What impact does it have on professionals? Health and Social Care in the Community, 13, 155-163.
2. Association for Children's Palliative Care (ACT) (2007) The Transition Care Pathway: A Framework for the Development of Multi-agency Care Pathways for Young People with Life-Threatening and Life Limiting Conditions. ACT, Bristol, UK.
3. American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians -American Society of Internal Medicine (2002) Consensus statement on health care transitions for young adults with special health care needs. Pediatrics, 110, 1304-1306.
4. Beresford, B. (2004) On the road to nowhere? Young disabled people and transition. Child: Care Health Development, 30, 581-587.
5. Carnevale, F., Alexander, E., Davis, M., Rennick, J. & Troini, R. (2006) Daily living with distress and enrichment: The moral experience of families with ventilator-assisted children at home. Pediatrics, 117, 48-60.
6. Charmaz, K. (2006) Constructing Grounded Theory: A Practical Guide through Qualitative Analysis. Sage, London, UK.
7. Department for Children Schools and Families, D.o.H., Council for Disabled Children, National Children's Bureau (2007) A Transition Guide for All Services: Key Information for Professionals about the Transition Process for Disabled Young People. Department for Children, Schools and Families, London, UK.
8. Department of Health, Department for Education and Skills (2004) The National Service Framework for Children, Young People and Maternity Services: Disabled Child. Department of Health, London, UK.
9. Department of Health, Department for Education and Skills (2006). Transition: Getting it Right for Young People. Department of Health, London, UK.
10. Fiorentino, L., Phillips, D., Walker, A. & Hall, D. (1998) Leaving paediatrics: The experience of service transition for young disabled people and their family carers. Health and Social Care in the Community, 6, 260-270.
11. Flume, P., Anderson, D., Hardy, K. & Gray, S. (2001) Transition programs in cystic fibrosis centers: Perceptions of pediatric and adult program directors. Pediatric Pulmonology, 31, 443-450.
12. Forbes, A., While, A., Ullman, R., Lewis, S., Mathes, L. & Griffiths, P. (2002) A Multi-method Review to Identify Components of Practice Which May Promote Continuity in the Transition from Child to Adult Care for Young People with Chronic Illness or Disability. Kings College London, London, UK.
13. Glendinning, C., Kirk, S., Lawton, D. & Guiffrida, A. (2001) Technology dependent children in the community: Definitions, numbers and costs. Child Care Health Development, 27, 321-334.
14. Heaton, J., Noyes, J., Sloper, P. & Shah, R. (2005) Families'experiences of caring for technology-dependent children: A temporal perspective. Health and Social Care in the Community, 13, 441-450.
15. Hendey, N. & Pascall, G. (2002) Becoming Adult: Young Disabled People Speak. Joseph Rowntree Foundation, York, UK.
16. Hirst, M. & Baldwin, S. (1994) Unequal Opportunities: Growing up Disabled. Social Policy Research Unit, University of York, York, UK.
17. Karlsson, A., Arman, M. & Wikblad, K. (2006) Teenagers with type 1 diabetes: A phenomenological study of the transition towards autonomy in self-management. International Journal of Nursing Studies, 45, 562-570.
18. Kipps, S., Bahu, T., Ong, K., Ackland, F., Brown, R., Fox, C., Griffin, N., Knight, A., Mann, N., Neil, H., Simpson, H., Edge, J. & Dunger, D. (2002) Current methods of transfer of young people with type 1 diabetes to adult services. Diabetic Medicine, 19, 649-654.
19. Kirk, S. & Glendinning, C. (2004) Developing services to support parents caring for a technology-dependent child at home. Child Care Health Development, 30, 209-218.
20. Lotstein, D., McPherson, M., Strickland, B. & Newacheck, P. (2005) Transition planning for youth with special health care needs: Results from the national survey of children with special health care needs. Pediatrics, 115, 1562-1568.
21. McDonagh, J. & Viner, R. (2006) Lost in transition: Between paediatric and adult services. British Medical Journal, 332, 435-436.
22. McDonagh, J., Shaw, K. & Southwood, T. (2006) Growing up and moving on: Development and preliminary evaluation of a transitional care programme for a multicentre cohort of adolescents with juvenile idiopathic arthritis. Journal of Child Health Care, 10, 22-42.
23. McKeever, P. & Miller, K. (2004) Mothering children who have disabilities: A Bourdieusian interpretation of maternal practices. Social Science & Medicine, 59, 1177-1191.
24. Morris, J. (1999) Hurting into the Void: Transition to Adulthood for Young Disabled People with Complex Health and Support Needs. Pavilion Publishing, Brighton, UK.
25. Morris, J. (2002) Moving into Adulthood. Joseph Rowntree Foundation, York, UK.
26. Nasr, S., Campbell, C. & Howatt, W. (1992) Transition program from pediatric to adult care for cystic fibrosis. Journal of Adolescent Health, 13, 682-685.
27. Noyes, J., Godfrey, C. & Beecham, J. (2006) Resource use and service costs for ventilator-dependent children and young people in the UK. Health and Social Care in the Community, 14, 508-522.
28. Office of the Deputy Prime Minister (2005) Improving Services, Improving Lives. Social Exclusion Unit, London, UK.
29. Prime Minister's Strategy Unit (2005) Improving the Life Chances of Disabled People. The Cabinet Office Strategy Unit, London, UK.
30. Rehm, R. & Bradley, J. (2005) Normalisation in families raising a child who is medically fragile/technology dependent and developmentally delayed. Qualitative Health Research, 15, 807-820.
31. Reiss, J. & Gibson, R. (2002) Health care transition: Destinations unknown. Pediatrics, 110, 1307-1314.
32. Riddell, S. (1998) The dynamic of transition to adulthood. In: Growing up with Disability (eds. C. Robinson & K. Stalker), pp. 189-209. Jessica Kingsley Publisher, London.
33. Rosen, D. (1995) Between two worlds: Bridging the cultures of child health and adult medicine. Journal of Adolescent Health, 17, 10-16.
34. Rosen, D., Blum, R., Britto, M., Sawyer, S. & Siegel, D. (2003) Transition to adult health care for adolescents and young adults with chronic conditions: Position paper of the society for adolescent medicine. Journal of Adolescent Health 33, 309-311.
35. Royal College of Nursing (2004) Adolescent Transition Care. Royal College of Nursing, London, UK.
36. Royal College of Paediatrics and Child Health (2003) Bridging the Gap Health Care for Adolescents. Royal College of Paediatrics and Child Health, London, UK.
37. Scal, P., Evans, T., Blozis, S., Okinow, N. & Blum, R. (1999) Trends in transition from pediatric to adult health care services for young adults with chronic conditions. Journal of Adolescent Health, 24, 259-264.
38. Schilling, L., Knafl, K. & Grey, M. (2006) Changing patterns of self-management in youth with type 1 diabetes. Journal of Pediatric Nursing, 21, 412-423.
39. Sholl, C., Dancyger, F., Parsons, M. & Dale, C. (2005) Transition pathway: Guidance and tools to support person centred transition planning with young disabled people aged 13-25. Transition Pathway Partnership. Available at: http://www.transitionpathway.co.uk/ (accessed from 13 June 2008).
40. Sloper, P. & Beresford, B. (2006) Families with disabled children. British Medical Journal, 333, 928-929.
41. Social Care Institute for Excellence (2004) Transition of Young People with Physical Disabilities or Chronic Illnesses from Children's to Adult's Services. Social Care Institute for Excellence, London, UK.
42. Strauss, A. & Corbin, J. (1998) Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory. Sage, Thousand Oaks, CA, USA.
43. Telfair, J., Myers, J. & Drezner, S. (1994) Transfer as a component of the transition of adolescents with sickle cell disease to adult care: adolescent, adult and parent perspectives. Journal of Adolescent Health, 15, 558-565.
44. Townsley, R. (2004) The Road Ahead? A Literature Review. Norah Fry Research Centre, Bristol, UK.
45. Tuffrey, C. & Pearce, A. (2003) Transition from paediatric to adult medical services for young people with chronic neurological problems. Journal of Neurology, Neurosurgery and Psychiatry, 74, 1011-1013.
46. Viner, R. (1999) Transition from paediatric to adult care: Bridging the gap or passing the buck? Archives of Disease in Childhood, 81, 271-275.
47. While, A., Forbes, A., Ullman, R., Lewis, S., Mathes, L. & Griffiths, P. (2004) Good practices that address continuity during transition from child to adult care: Systhesis of the evidence. Child: Care Health Development, 30, 439-452.
48. Williams, B., Mukhopadhyay, S., Dowell, J. & Coyle, J. (2007) From child to adult: An exploration of shifting family roles and responsibilities in managing physiotherapy for cystic fibrosis. Social Science & Medicine, 65, 2135-2146.