Identifying the supportive care needs of adolescent and young adult survivors of cancer: A qualitative analysis and systematic literature review

Supportive Care in Cancer

Volumn 22, Issue 4, 2014, Pages 947-959

  Tsangaris, Elena ^a   Johnson, Jessica ^a   Taylor, Rachel ^b   Fern, Lorna ^b   Bryant Lukosius, Denise ^a   Barr, Ronald ^a   Fraser, Graeme ^a   Klassen, Anne ^a  

^a MCMASTER UNIVERSITY   (Canada)

^b UNIVERSITY COLLEGE LONDON HOSPITALS   (United Kingdom)

Author keywords

Adolescent; Cancer; Health; Needs; Supportive care; Young adult

Indexed keywords

ARTICLE; CANADA; CANCER CENTER; CANCER SURVIVOR; DAILY LIFE ACTIVITY; EMOTION; HEALTH CARE FACILITY; HEALTH CARE NEED; HEALTH PROGRAM; HEALTH SERVICE; HUMAN; INTERPERSONAL COMMUNICATION; MEDICAL INFORMATION; NEOPLASM; PRIORITY JOURNAL; PSYCHOLOGICAL ASPECT; QUALITATIVE ANALYSIS; QUALITATIVE RESEARCH; SOCIAL SUPPORT; SYSTEMATIC REVIEW;

ADOLESCENT; ADULT; CANADA; FEMALE; HEALTH SERVICES NEEDS AND DEMAND; HUMANS; MALE; NEOPLASMS; SOCIAL CLASS; STRESS, PSYCHOLOGICAL; SURVIVORS; YOUNG ADULT;

EID: 84895895327     PISSN: 09414355     EISSN: 14337339     Source Type: Journal    
DOI: 10.1007/s00520-013-2053-7     Document Type: Article

References (55)

1. Canadian Cancer Society (2009) Canadian cancer statistics special topic: cancer in adolescents and young adults. Canadian Cancer Society, Toronto
2. Ramphal R, D'Agostino N, Klassen A, McLeod M, De Pauw S, Gupta A (2012) Practices and resources devoted to the care of adolescents and young adults with cancer in Canada: a survey of pediatric and adult cancer treatment centers. J Adolesc Young Adult Oncol 1(3):140-144
3. Da P, Ellison LF, Barr RD, Semenciw R, Marrett LD, Weir HK, Dryer D, Grunfeld E (2011) Canadian adolescents and young adults with cancer: opportunity to improve coordination and level of care. Can Med Assoc J 183(3):e187-e194
4. Bleyer A, Barr R, Hayes-Lattin B, Thomas D, Ellis C, Anderson B (2008) The distinctive biology of cancer in adolescents and young adults. Nat Rev 8(4):288-298 (Pubitemid 351430865)
5. Soliman H, Agresta SV (2008) Current issues in adolescent and young adult cancer survivorship. Cancer Control 15(1):55-62 (Pubitemid 351481992)
6. Fernandez CV, Barr RD (2006) Adolescents and young adults with cancer: an orphaned population. Pediatr Child Health 11(2):103-106
7. Albritton KH, Bleyerb WA (2003) The management of cancer in the older adolescent. Eur J Cancer 39(18):2584-2599
8. Decker CL (2007) Social support and adolescent cancer survivors: a review of the literature. Psychooncology 16(1):1-11
9. Canadian Partnership Against Cancer Corporation (2012) Adolescents and young adults with cancer. http://www.cancerview.ca/cv/portal/Home/ TreatmentAndSupport/TSProfessionals/Adolescents-Young-Adults/AYAcancer-ca? -afrLoop=874103186963000&-afrWindowMode=0&-adf.ctrl-state=y01mud8tc-75. Accessed Aug 2012
10. Ferrari A, Thomas D, Franklin ARK, Hayes-Lattin BM, Mascarin M, van der Graaf W, Albritton AH (2010) Starting an adolescent and young adult program: some success stories and some obstacles to overcome. J Clin Oncol 28(32):4850-4857
11. Fitch MI (2000) Supportive care for cancer patients. Hosp Q 3(4):39-46
12. Fitch MI (2008) Supportive care framework. Can Oncol Nurs J 18(1): 6-14
13. Foot G (1996) Needs assessment in tertiary and secondary oncology practice: a conceptual and methodological exposition. Ph.D. dissertation, Newcastle: University of Newcastle
14. Mullan F (1985) Seasons of survival: reflections of a physician with cancer. N Engl J Med 313(4):270-273
15. Sandelowski M (2000) Whatever happened to qualitative description? Res Nurs Health 25(4):334-340
16. Neergaard MA, Olesen F, Andersen RS, Sondergaard J (2009) Qualitative description - the poor cousin of health research? Med Res Methodol 9:52
17. Miller WL, Crabtree BF (1992) Primary care research: amultimethod typology and qualitative road map. In: Crabtree BF, Miller WL (eds) Doing qualitative research. Sage, Newbury Park, pp 3-28
18. Wolcott HF (1994) Transforming qualitative data: description, analysis, and interpretation. Sage, Thousand Oaks
19. Kuzel A (1999) Sampling in qualitative inquiry. In: Crabtree BF, Miller WL (eds) Doing qualitative research, 2nd edn. Sage, Thousand Oaks, pp 33-45
20. Creswell JW (2007) Qualitative inquiry and research design: choosing among five traditions. Sage, Thousand Oaks
21. Sandelowski M (1995) Sample size in qualitative research. Res Nurs Health 18(2):179-183
22. Miles M, Huberman A (1994) Qualitative data analysis: an expanded source book, 2nd edn. Sage, Thousand Oaks
23. Bazeley P (2007) Qualitative data analysis with NVivo. Sage, Thousand Oaks
24. Sandelowski M (1993) Rigor or rigor mortis: the problem of rigor in qualitative research revisited. ANS Adv Nurs Sci 16(2):1-8
25. Creswell JW (2003) Research design: qualitative, quantitative and mixed methods approaches. Sage, Thousand Oaks
26. Morse JM, Barrett M, Mayan M, Olson K, Spiers J (2002) Verification strategies for establishing reliability and validity in qualitative research. Int J Qual Methods 1(2)
27. Lincoln YS, Guba E (1985) Naturalistic inquiry. Sage, Beverly Hills
28. Sandelowski M (1986) The problem of rigor in qualitative research. Adv Nurs Sci 8(3):27-37
29. Creswell JW, Piano Clark VL (2007) Designing and conducting mixed methods research. Sage, Thousand Oaks
30. Richards L (2005) Handling qualitative data: a practical guide. Sage, Thousand Oaks
31. Graneheim UH, Lundman B (2004) Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today 24(2):105-112 (Pubitemid 38232767)
32. Critical Appraisal Skills Program (CASP) (2006) 10 questions to help you make sense of qualitative research. Public Health Resource Unit, England
33. von Elm E, Altman DG, Egger M, Pocock SJ, Gotzsche PC, Vandenbroucke JP (2007) STROBE initiative. The strengthening the reporting of observational studies in epidemiology (STROBE) statement: guidelines for reporting observational studies. Ann Intern Med 147(8):573-577 (Pubitemid 351664504)
34. David CL, Williamson K, Tilsley DW (2012) A small scale, qualitative focus group to investigate the psychosocial support needs of teenage young adult cancer patients undergoing radiotherapy in Wales. Eur J Oncol Nurs 16(4):375-379
35. Palmer S, Mitchell A, Thompson K, Sexton M (2007) Unmet needs among adolescent cancer patients: a pilot study. Palliat Support Care 5(2):27-134
36. Thompson K, Palmer S, Dyson G (2009) Adolescents and young adults: issues in transition from active therapy into follow-up care. Eur J Oncol Nurs 13(3):207-212
37. Rabin C, Simpson N, Morrow K, Pinto B (2011) Behavioral and psychosocial program needs of young adult cancer survivors. Qual Health Res 21(6):796-806
38. Wilkinson J (2003) Young people with cancer - how should their care be organized? Eur J Cancer Care 12(1):65-70
39. Blumberg BD, Lewis MJ (1983) Developing materials to meet the educational needs of adolescents with cancer. Oncol Nurs Forum 10(1):35-39
40. Zebrack B, Mills J, Weitzman TS (2007) Health and supportive care needs of young adult cancer patients and survivors. J Cancer Surviv 1(2):137-145
41. Zebrack B (2008) Information and service needs for young adult cancer patients. Support Care Cancer 16(12):1353-1360
42. Zebrack B (2009) Information and service needs for young adult cancer survivors. Support Care Cancer 17(4):349-357
43. Decker C, Phillips HJE (2004) Information needs of adolescents with cancer. J Pediatr Oncol Nurs 21(6):327-334 (Pubitemid 39486329)
44. Millar B, Patterson P, Desille N (2010) Emerging adulthood and cancer: how unmet needs vary with time-since-treatment. Palliat Support Care 8(2):151-158
45. Zebrack B, Bleyer A, Albritton K, Medearis S, Tang J (2006) Assessing the health care needs of adolescent and young adult cancer patients and survivors. Cancer 107(12):2915-2923 (Pubitemid 44937047)
46. Ishibashi A (2001) The need of children and adolescents with cancer for information and social support. Cancer Nurs 24(1):61-67
47. Felder-Puig R, Peters C, Matthes-Martin S, Lamche M, Felsberger C, Gadner H, Topf R (1999) Psychosocial adjustment of pediatric patients after allogeneic stem cell transplantation. Bone Marrow Transplant 24(1):75-80 (Pubitemid 29346609)
48. Hinds P, Martin J (1988) Hopefulness and the self-sustaining process in adolescents with cancer. Nurs Res 37(6):336-340 (Pubitemid 19023500)
49. Olsen PR, Harder I (2009) Keeping their world together-meanings and actions created through network-focused nursing in teenager and young adult cancer care. Cancer Nurs 32(6):493-502
50. Zebrack BJ (2011) Psychological, social, and behavioral issues for young adults with cancer. Cancer 117(10 suppl):2289-2294
51. Fernandez C, Fraser GAM, Freeman C, Grunfeld E, Gupta A, Mery LS, De Pauw S, Schacter B (2011) Principles and recommendations for the provision of healthcare in Canada to adolescent and young adult-aged cancer patients and survivors. J Adolesc Young Adult Oncol 1(1):53-59
52. Smith SL, Singh-Carlson S, Downie L, Payeur N, Wai ES (2011) Survivors of breast cancer: patient perspectives on survivorship care planning. J Cancer Surviv 5(4):337-344
53. Hahn EE, Ganz PA (2011) Survivorship programs and care plans in practice: variations on a theme. J Oncol Pract 7(2):70-75
54. American College of Surgeons Cancer Programs (2012) Cancer Program Standards (CPS) 2011 Project. http://www.facs.org/cancer/coc/cps2011.html. Accessed June 2013
55. National Institute of Health Research (2013) BRIGHTLIGHT: do specialist services for TYA with cancer add value? www.brightlightstudy.com. Accessed June 2013