Identifying the supportive care needs of adolescent and young adult survivors of cancer: a qualitative analysis and systematic literature review
详细信息 查看全文
- 作者：Elena Tsangaris (1)
Jessica Johnson (2)
Rachel Taylor (3)
Lorna Fern (4)
Denise Bryant-Lukosius (5)
Ronald Barr (2)
Graeme Fraser (6)
Anne Klassen (2) - 关键词：Adolescent ; Young adult ; Cancer ; Health ; Supportive care ; Needs
- 刊名：Supportive Care in Cancer
- 出版年：2014
- 出版时间：April 2014
- 年：2014
- 卷：22
- 期：4
- 页码：947-959
- 全文大小：352 KB
- 参考文献：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):140-44 g/10.1089/jayao.2011.0023" target="_blank" title="It opens in new window">CrossRef
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 g/10.1503/CMAJ.100800" target="_blank" title="It opens in new window">CrossRef
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):288-98 g/10.1038/nrc2349" target="_blank" title="It opens in new window">CrossRef
5. Soliman H, Agresta SV (2008) Current issues in adolescent and young adult cancer survivorship. Cancer Control 15(1):55-2
6. Fernandez CV, Barr RD (2006) Adolescents and young adults with cancer: an orphaned population. Pediatr Child Health 11(2):103-06
7. Albritton KH, Bleyerb WA (2003) The management of cancer in the older adolescent. Eur J Cancer 39(18):2584-599 g/10.1016/j.ejca.2003.09.013" target="_blank" title="It opens in new window">CrossRef
8. Decker CL (2007) Social support and adolescent cancer survivors: a review of the literature. Psychooncology 16(1):1-1 g/10.1002/pon.1073" target="_blank" title="It opens in new window">CrossRef
9. Canadian Partnership Against Cancer Corporation (2012) Adolescents and young adults with cancer. g_Adults/AYAcancer_ca?_afrLoop=874103186963000&_afrWindowMode=0&_adf.ctrl-state=y01mud8tc_75" class="a-plus-plus">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):4850-857 g/10.1200/JCO.2009.23.8097" target="_blank" title="It opens in new window">CrossRef
11. Fitch MI (2000) Supportive care for cancer patients. Hosp Q 3(4):39-6
12. Fitch MI (2008) Supportive care framework. Can Oncol Nurs J 18(1):6-4 g/10.5737/1181912x181614" target="_blank" title="It opens in new window">CrossRef
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):270-73 g/10.1056/NEJM198507253130421" target="_blank" title="It opens in new window">CrossRef
15. Sandelowski M (2000) Whatever happened to qualitative description? Res Nurs Health 25(4):334-40 g/10.1002/1098-240X(200008)23:4<334::AID-NUR9>3.0.CO;2-G" target="_blank" title="It opens in new window">CrossRef
16. Neergaard MA, Olesen F, Andersen RS, Sondergaard J (2009) Qualitative description—the poor cousin of health research? Med Res Methodol 9:52 g/10.1186/1471-2288-9-52" target="_blank" title="It opens in new window">CrossRef
17. Miller WL, Crabtree BF (1992) Primary care research: a multimethod typology and qualitative road map. In: Crabtree BF, Miller WL (eds) Doing qualitative research. Sage, Newbury Park, pp 3-8
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 33-5
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):179-83 g/10.1002/nur.4770180211" target="_blank" title="It opens in new window">CrossRef
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- g/10.1097/00012272-199312000-00002" target="_blank" title="It opens in new window">CrossRef
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):27-7 g/10.1097/00012272-198604000-00005" target="_blank" title="It opens in new window">CrossRef
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):105-12 g/10.1016/j.nedt.2003.10.001" target="_blank" title="It opens in new window">CrossRef
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):573-77 g/10.7326/0003-4819-147-8-200710160-00010" target="_blank" title="It opens in new window">CrossRef
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):375-79 g/10.1016/j.ejon.2011.08.002" target="_blank" title="It opens in new window">CrossRef
35. Palmer S, Mitchell A, Thompson K, Sexton M (2007) Unmet needs among adolescent cancer patients: a pilot study. Palliat Support Care 5(2):27-34 g/10.1017/S1478951507070198" target="_blank" title="It opens in new window">CrossRef
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):207-12 g/10.1016/j.ejon.2009.05.001" target="_blank" title="It opens in new window">CrossRef
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):796-06 g/10.1177/1049732310380060" target="_blank" title="It opens in new window">CrossRef
38. Wilkinson J (2003) Young people with cancer—how should their care be organized? Eur J Cancer Care 12(1):65-0 g/10.1046/j.1365-2354.2003.00313.x" target="_blank" title="It opens in new window">CrossRef
39. Blumberg BD, Lewis MJ (1983) Developing materials to meet the educational needs of adolescents with cancer. Oncol Nurs Forum 10(1):35-9
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):137-45 g/10.1007/s11764-007-0015-0" target="_blank" title="It opens in new window">CrossRef
41. Zebrack B (2008) Information and service needs for young adult cancer patients. Support Care Cancer 16(12):1353-360 g/10.1007/s00520-008-0435-z" target="_blank" title="It opens in new window">CrossRef
42. Zebrack B (2009) Information and service needs for young adult cancer survivors. Support Care Cancer 17(4):349-57 g/10.1007/s00520-008-0469-2" target="_blank" title="It opens in new window">CrossRef
43. Decker C, Phillips HJE (2004) Information needs of adolescents with cancer. J Pediatr Oncol Nurs 21(6):327-34 g/10.1177/1043454204269606" target="_blank" title="It opens in new window">CrossRef
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):151-58 g/10.1017/S1478951509990903" target="_blank" title="It opens in new window">CrossRef
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):2915-923 g/10.1002/cncr.22338" target="_blank" title="It opens in new window">CrossRef
46. Ishibashi A (2001) The need of children and adolescents with cancer for information and social support. Cancer Nurs 24(1):61-7 g/10.1097/00002820-200102000-00010" target="_blank" title="It opens in new window">CrossRef
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):75-0 g/10.1038/sj.bmt.1701853" target="_blank" title="It opens in new window">CrossRef
48. Hinds P, Martin J (1988) Hopefulness and the self-sustaining process in adolescents with cancer. Nurs Res 37(6):336-40 g/10.1097/00006199-198811000-00005" target="_blank" title="It opens in new window">CrossRef
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):493-02 g/10.1097/NCC.0b013e3181b3857e" target="_blank" title="It opens in new window">CrossRef
50. Zebrack BJ (2011) Psychological, social, and behavioral issues for young adults with cancer. Cancer 117(10 suppl):2289-294 g/10.1002/cncr.26056" target="_blank" title="It opens in new window">CrossRef
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):53-9 g/10.1089/jayao.2010.0008" target="_blank" title="It opens in new window">CrossRef
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):337-44 g/10.1007/s11764-011-0185-7" target="_blank" title="It opens in new window">CrossRef
53. Hahn EE, Ganz PA (2011) Survivorship programs and care plans in practice: variations on a theme. J Oncol Pract 7(2):70-5 g/10.1200/JOP.2010.000115" target="_blank" title="It opens in new window">CrossRef
54. American College of Surgeons Cancer Programs (2012) Cancer Program Standards (CPS) 2011 Project. g/cancer/coc/cps2011.html" class="a-plus-plus">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? ghtlightstudy.com/" class="a-plus-plus">www.brightlightstudy.com. Accessed June 2013 - 作者单位：Elena Tsangaris (1)
Jessica Johnson (2)
Rachel Taylor (3)
Lorna Fern (4)
Denise Bryant-Lukosius (5)
Ronald Barr (2)
Graeme Fraser (6)
Anne Klassen (2)
1. Department of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, Ontario, Canada
2. Department of Pediatrics, McMaster University, Room HSC 3N27, 1200 Main Street West, Hamilton, Ontario, L8S 4J9, Canada
3. Cancer Clinical Trials Unit, University College London Hospitals NHS Foundation Trust & Department of Children’s Nursing, London South Bank University, London, England
4. National Cancer Research Institute, Teenage & Young Adult Clinical Studies Group, University College Hospitals NHS Foundation Trust, London, England
5. School of Nursing, McMaster University, Hamilton, Ontario, Canada
6. Department of Oncology, McMaster University and Juravinski Cancer Center, Hamilton, Ontario, Canada - ISSN：1433-7339
文摘
Purpose In Canada, adolescent survivors of cancer are treated mainly at pediatric centers, while young adults are treated at adult centers. Both care environments are reported as being inappropriate and do not fulfill the needs of adolescents and young adults (AYA). The purpose of this study was to investigate supportive care needs (SCN) of AYA survivors of cancer. Methods Qualitative description and a systematic literature review (SLR) were used to explore this topic. For the qualitative study, a purposive sample of AYA survivors (15 to 25?years of age) was recruited from a pediatric and an adult cancer program in one area of Ontario, Canada. Interviews were conducted, recorded digitally, and transcribed verbatim. Line-by-line coding was used to establish themes and subthemes. The SLR entailed a systematic search of electronic databases from their date of inception to October 2011. Two screeners worked independently to screen abstracts, titles, and relevant full-text articles. Findings from both studies were synthesized. Results Twenty interviews were conducted for the qualitative study. For the SLR, 760 citations were identified, of which 12 met inclusion criteria. The most commonly reported SCN, from both studies, were social needs, information sharing and communication needs, and service provision needs. Conclusion Comparison of findings from both studies reveals many overlapping (e.g., entertainment for teens) and novel (e.g., collaboration) themes. Study results will be used to inform the potential development of a comprehensive healthcare program for AYA.