Follow up after childhood cancer: A typology of young people's health care need

Clinical Effectiveness in Nursing

Volumn 9, Issue 3-4, 2005, Pages 133-146

  Gibson, Faith ^a   Aslett, Helen ^b   Levitt, Gill ^a   Richardson, Alison ^c  

^a GREAT ORMOND STREET HOSPITAL   (United Kingdom)

^b LONDON METROPOLITAN UNIVERSITY   (United Kingdom)

^c KING'S COLLEGE LONDON   (United Kingdom)

Author keywords

Long term follow up care; Participatory research; Typology; Young cancer survivors

Indexed keywords

EID: 33751549116     PISSN: 13619004     EISSN: None     Source Type: Journal    
DOI: 10.1016/j.cein.2006.08.005     Document Type: Article

References (75)

1. Bhatia S., and Meadows A.T. Long-term follow-up of childhood cancer survivors: future directions for clinical care and research. Pediatric Blood Cancer 46 (2006) 143-148
2. Brada M. Is there a need to follow-up cancer patients?. European Journal of Cancer 31a 5 (1995) 655-657
3. Carter B. 'They've got to be as good as mum and dad': Children with complex health care needs and their siblings' perceptions of a Diana community nursing service. Clinical Effectiveness in Nursing 9 (2005) 49-61
4. Carter B., Lambrenos K., and Thursfield J. A pain workshop: an approach to eliciting the views of young people with chronic pain. Journal of Clinical Nursing 11 6 (2002) 753-762
5. Cavet J., and Sloper P. The participation of children and young people in decisions about UK service development. Child: Care, Health and Development 30 6 (2004) 613-621
6. th November 2005.
7. Coad, J., Lewis, A., 2004. Engaging children and young people in research: literature review for the National Evaluation of the Children's Fund. www.ne-cf.org accessed October 2005.
8. Coffey A., and Atkinson P. Making Sense of Qualitative Data (1996), Sage Publications, London
9. Cox K., and Wilson E. Follow-up for people with cancer: nurse-led services and telephone interventions. Journal of Advanced Nursing 43 1 (2003) 51-61
10. Curry H.L., Parkes S.E., Powell J.E., and Mann J.R. Caring for survivors of childhood cancers: the size of the problem. European Journal of Cancer 42 4 (2006) 501-508
11. Curtis K., Roberts H., Copperman J., Downie A., and Liabo K. 'How come I don't get asked no questions?' Researching 'hard to reach' children and teenagers. Child and Family Social Work 9 (2004) 167-175
12. D'Angio G. Pediatric cancer in perspective: cure is not enough. Cancer 35 supplement (1975) 867-870
13. Darbyshire P., MacDougall C., and Schille W. Multiple methods in qualitative research with children: more insight or just more?. Qualitative Research 5 4 (2005) 417-436
14. Dashiff C. Data collection with adolescents. Journal of Advanced Nursing 33 3 (2001) 343-349
15. Department of Health, 2000. The NHS Cancer Plan. London, DH.
16. Department of Health: Children and Young People's Unit, 2001. Learning to listen: core principles for the involvement of children and young people. www.everychildmatters.gov.uk/_files/1F85704C1D67D71E30186FEBCEDED6D6.pdf . Accessed November 2005.
17. Department of Health, 2003. Action Plan "Listening, Hearing and Responding" http://www.dh.gov.uk/assetRoot/04/07/20/62/04072062.pdf Accessed on 4th November 2005.
18. Department of Health, 2004a. The National Service Framework for Children, Young People and Maternity Services Executive Summary http://www.dh.gov.uk/assetRoot/04/09/05/52/04090552.pdf Accessed on 4th November 2005.
19. Department of Health, 2004b. Choosing health: making healthy choices. London, DH.
20. th November 2005.
21. Department of Health, 2006. National Service Framework for Children, Young People and Maternity Services: Transition: getting it right for young people. London, DH.
22. Earle E.A., Davies H., Greenfield D., Ross R., and Eiser C. Follow-up care for childhood cancer survivors: a focus group analysis. European Journal of Cancer 41 18 (2005) 2882-2886
23. Eiser C., Levitt G., Leiper A., Havermans T., and Donovan C. Clinic audit for long-term survivors of childhood cancer. Archives of Diseases in Childhood 75 5 (1996) 405-409
24. Eiser C., Hill J.J., and Blacklay A. Surviving cancer: what does it mean for you? An evaluation of a clinic based intervention for survivors of childhood cancer. Psycho-oncology 9 (1999) 214-220
25. Friedman D.L., Freyer D.R., and Levitt G.A. Models of care for survivors of childhood cancer. Pediatric Blood Cancer 46 (2006) 159-168
26. Gibson F., and Soanes L. Long-term follow-up following childhood cancer: maximising the contribution of nursing. European Journal of Cancer 37 15 (2001) 1859-1868
27. Gibson, F., Richardson, A., Haslett, H., Levitt, G., 2005. Developing alternative models of long-term follow-up care in young adult cancer survivors of childhood cancer. Unpublished report submitted to CLIC Sargent. www.clicsargent.org.uk/.
28. Ginsberg J.P., Hobbie W.L., Carlson C.A., and Meadows A.T. Delivering long-term follow-up care to pediatric cancer survivors: transitional care issues. Pediatric Blood Cancer 46 (2006) 169-173
29. Goldsby R.E., and Ablin A.R. Surviving childhood cancer; now what? Controversies regarding long-term follow-up. Pediatric Blood Cancer 43 3 (2004) 211-214
30. Grover S. Why won't they listen to us: on giving power and voice to children participating in social research?. Childhood 11 1 (2004) 81-93
31. Hanna K., and Jacobs P. The use of photography to explore the meaning of health among adolescents with cancer. Issues in Contemporary Paediatric Nursing 16 3 (1993) 155-164
32. Harvey J., Hobbie WL., Shaw S., and Bottomley S. Providing quality care in childhood cancer survivorship: learning from the past, looking to the future. Journal of Pediatric Nursing 16 3 (1999) 117-125
33. Hill M., Davis J., Prout A., and Tisdall K. Moving the participation agenda forward. Children & Society 18 2 (2004) 77-96
34. Hobbie W.L. The role of the pediatric oncology nurse specialist in a follow-up clinic for long-term survivors of childhood cancer. Journal of the Association of Pediatric Oncology Nurses 3 4 (1986) 9-12
35. Hobbie W.L., Stuber M., and Meeske K. Symptoms of posttraumatic stress in young adult survivors of childhood cancer. Journal of Clinical Oncology 18 (2000) 4060-4066
36. Hollis R. The role of the specialist nurse in paediatric oncology in the United Kingdom. European Journal of Cancer 41 (2005) 1758-1764
37. Hooker L. Information needs of teenagers with cancer: developing a tool to explore the perceptions of patients and professionals. Journal of Cancer Nursing 1 4 (1997) 160-168
38. Horne B. Postal follow-up care for childhood cancer survivors. Cancer Nursing Practice 3 9 (2004) 26-28
39. Johnson R., Horne B., Feltbower R.G., Butler G.E., and Glaser A.W. Hospital attendance patterns in long-term survivors of cancer. Archives of Disease in Childhood 89 (2004) 374-377
40. Kaddan-Lottick N.S., Robison L.L., Gurney J.G., Neglia J.P., Yasui Y., Hayashi R., Hudson M., Greenberg M., and Mertens A. Childhood cancer survivors' knowledge about their past diagnosis and treatment. JAMA 287 (2002) 1832-1839
41. Kazak A.E., Barakat L.P., and Meeske K. Posttraumatic stress and family functioning, and social support in survivors of childhood leukaemia and their mothers and fathers. Journal of Consulting and Clinical Psychology 65 (1997) 120-129
42. Kirby, P., 2004. A guide to actively involving young people in research: for researchers, research commissioners, and managers. INVOLVE, Hampshire.
43. Lackner H., Benesch M., Schagerl S., Kerbl R., Schwinger W., and Urgan C. Prospective evaluation of late effects after childhood cancer therapy with a follow-up over 9 years. European Journal of Pediatrics 159 (2000) 750-758
44. Landier W., Bhatia S., Eshelman K.J., Forte K.J., Sweeney T., Hester A.L., Darling J., Armstrong F.D., Blatt J., et al. Development of Risk-based guidelines for paediatric cancer survivors: The children's oncology group long-term follow-up guidelines from the children's oncology group late effects committee and nursing discipline. Journal of Clinical Oncology 22 24 (2004) 4979-4990
45. Landier W., Wallace W.H.B., and Hudson M. Long-term follow-up of pediatric cancer survivors: education, surveillance and screening. Pediatric Blood Cancer 46 (2006) 149-158
46. Masera G., Chesler M., Jankovic M., Eden T., Nesbit M.E., Van Dongen-Melman J., Epelman C., Ben Arush M.W., Schuler D., Mulhern R., Adamoli L., Wilbur J., and Spinetta J.J. SIOP working committee on psychosocial issues in pediatric oncology: guidelines for care of long-term survivors. Medical and Pediatric Oncology 27 (1996) 1-2
47. Medical Research Council, 2000. A framework for development and evaluation of RCTs for complex interventions to improve health. MRC, London. (http://www.mrc.ac.uk/complex_packages.html accessed on 4th November 2005.
48. Mertens A.C., Cotter K.L., Foster B.M., Zebrack B.J., Hudson M.M., Eshelman D., Loftis L., Sozio M., and Oeffinger K.C. Improving health care for adult survivors of childhood cancer: Recommendations from a Delphi panel of health policy benefits of nurse-led cancer follow-up. Health Policy 69 (2004) 169-178
49. Moran-Ellis J., Alexander V.D., Cronin A., Dickinson M., Fielding J., Sleney J., and Thomas H. Triangulation and integration: processes, claims and implications. Qualitative Research 6 1 (2006) 45-59
50. Moules T. Research with children who use the NHS services: sharing the experience. In: Lowes L., and Hulatt I. (Eds). Involving Service Users in Health and Social Care Research (2005), Routledge, London and New York
51. th November 2005.
52. Oeffinger K.C., Eshelman G.E., Tomlinson G.E., and Buchanan G.R. Programs for adult survivors of childhood cancer. Journal of Clinical Oncology 16 8 (1998) 2864-2867
53. Oeffinger K.C., Eshelman D.A., Tomlinson G.E., Tolle M., and Schneider G.W. Providing primary care for long-term survivors of childhood acute lymphoblastic leukaemia. Journal of Family Practice 49 (2000) 1133-1146
54. Oeffinger K.C., Eshelman D.A., Tomlinson G.E., Buchanan G.R., and Foster B.M. Grading of late effects in young adult survivors of childhood cancer followed in an ambulatory adult setting. Cancer 88 7 (2000) 1687-1695
55. Oeffinger K.C., Mertens A.C., Hudson M.M., Gurney J.G., Casilla J., Chen H., Whitton J., Yeazel M., Yasui Y., and Robison L.L. Health care of young adult survivors of childhood cancer: A report from the childhood cancer survivor study. Annals of Family Medicine 2 1 (2004) 61-70
56. Oeffinger K.C., and Wallace W.H.B. Barriers to follow-up care of survivors in the United States and the United Kingdom. Pediatric Blood Cancer 46 (2006) 135-142
57. Patenaude A.F., and Kupst M.J. Psychosocial functioning in paediatric cancer. Journal of Paediatric Psychology 30 (2005) 9-27
58. Patton M. Qualitative analysis and interpretation. In: Patton M. (Ed). Qualitative Research and Evaluation Methods. third ed. (2002), Sage Publications, Thousand Oaks, California 431-534
59. Ritchie J., Spencer L., and O'Connor W. Carrying out qualitative analysis. In: Ritchie J., and Lewis J. (Eds). Qualitative Research Practice: A Guide for Social Science Students and Researchers (2003), Sage, London 217-262
60. Royal College of Paediatrics and Child Health, 2003. Bridging the gaps: health care for adolescents. RCPCH, London.
61. Sandelowski M. Combining qualitative and quantitative sampling, data collection, and analysis techniques in mixed methods studies. Research in Nursing & Health 23 (2000) 246-255
62. Sinclair R. Participation in practice: making it meaningful, effective and sustainable. Children & Society 18 2 (2004) 106-118
63. Soanes L., Bravery K., Bayliss J., Gibson F., and Parsons E. The development of nursing roles in a day-care setting. In: Gibson F., Soanes L., and Sepion B. (Eds). Perspectives in Paediatric Oncology Nursing (2004), Whurr Publishers, London
64. th November 2005.
65. Taylor A., Hawkins M., Griffiths A., Douglas C., Jenney M., Wallace W.H., and Levitt G. Long-term follow-up of survivors of childhood cancer in the UK. Paediatric Blood Cancer 42 (2004) 161-168
66. th November 2005.
67. th November 2005.
68. Tritter J., Daykin N., Evans S., and Sanidas M. Improving Cancer Services through Patient Involvement (2004), Radcliffe Medical Press, Oxford
69. Veale A. Creative methodologies in participatory research with children. In: Greene S., and Hogan D. (Eds). Researching Children's Experience: Approaches and Methods (2005), Sage Publications, London 253-272
70. Von der Weid N., and Wagner H. Organisation of follow-up in paediatric oncology. European Journal of Cancer 39 8 (2003) 1150-1154
71. Wallace W.H., Blacklay A., Eiser C., Davies H., Hawkins M., Levitt G.A., and Jenney M.E.M. Regular review: Developing strategies for long term follow up of survivors of childhood cancer. BMJ 323 7307 (2001) 271-274
72. While A., Forbes A., Ullman R., Lewis S., Mathes L., and Griffiths P. Good practices that address continuity during transition from child to adult care: synthesis of the evidence. Child Care, Health & Development 30 5 (2004) 439-452
73. Whittemore R., Chase S.K., and Lynn Mandle C. Validity in qualitative research. Qualitative Health Research 11 4 (2001) 522-537
74. Young B., Dixon-woods M., Windridge K.C., and Heney D. Managing communication with young people who have a potentially life threatening illness: qualitative study of patients and parents. BMJ 326 (2003) 305-314
75. Zebrack B.J., Eshelman D., Hudson M., Mertens A.C., Cotter K.L., Foster B.M., Lotis L., Sozio M., and Oeffinger K.C. Health care for childhood cancer survivors: insights and perspectives from a Delphi panel of young adult survivors of childhood cancer. Cancer 100 4 (2004) 843-850