Abstract
Cancer survivors face many challenges, and cancer support groups provide a range of support. Several reports have shown the benefits of support groups. However, it is not clear how Japanese cancer survivors use them. This study aimed to examine cancer survivors’ awareness of and reasons for participation or non-participation in cancer support groups. We conducted a cross-sectional questionnaire survey with ambulatory patients with cancer across eight designated cancer hospitals. The questionnaire covered patients’ demographics, disease characteristics, participation/non-participation in cancer support groups, and reasons for participation/non-participation. In total, 569 questionnaires were distributed, and responses were received from 275 patients with cancer. Of these, 135 patients were aware of support groups and 23 had participated in a group. Patients who were aware of support groups were more likely to be young, female patients. Many patients learned about support groups from hospital notices. Most support group participants expected to receive information about the disease and treatment (91%). They also wanted to hear about other patients’ experiences (73%). The most common reasons for non-participation were “no particular reason” (38%) and “family or friends support me” (27%). About half of participating patients were unaware of support groups. Even among patients who were aware, many did not attend a support group. Developing a better understanding of support group use in cancer survivors may enhance provision of adequate care based on individual needs.
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References
Sanson-Fisher R, Girgis A, Boyes A, Bonevski B, Burton L, Cook P. 2000. The unmet supportive care needs of patients with cancer.Supportive care review group Cancer 88:226–237.
Harrison JD, Young JM, Price MA, Butow PN, Solomon MJ (2009) What are the unmet supportive care needs of people with cancer? A systematic review. Support Care Cancer 17:1117–1128
Yokoo M, Akechi T, Takayama T, Karato A, Kikuuchi Y, Okamoto N, Katayama K, Nakanotani T, Ogawa A (2014) Comprehensive assessment of cancer patients’ concerns and the association with quality of life. Jpn J Clin Oncol 44:670–676
National Coalition for Cancer Survivorship. 2014. Defining cancer survivorship http://www.canceradvocacy.org/news/defining-cancer-survivorship/ Accessed 27 July 2016
Adamsen L (2002) ‘From victim to agent’: the clinical and social significance of self-help group participation for people with life-threatening diseases. Scand J Caring Sci 16(3):224–231
Nápoles-Springer AM, Ortíz C, O'Brien H, Díaz-Méndez M, Pérez-Stable EJ (2007) Use of cancer support groups among Latina breast cancer survivors. J Cancer Surviv 1:193–204
Deans G, Bennett-Emslie GB, Weir J, Smith DC, Kaye SB (1988) Cancer support groups—who joins and why? Br J Cancer 58:670–674
Ussher J, Kirsten L, Butow P, Sandoval M (2006) What do cancer support groups provide which other supportive relationships do not? The experience of peer support groups for people with cancer. Soc Sci Med 62:2565–2576
Weis J (2003) Support groups for cancer patients. Support Care Cancer 11:763–768
Campbell HS, Phaneuf MR, Deane K (2004) Cancer peer support programs—do they work? Patient Educ Couns 55:3–15
Stevinson C, Lydon A, Amir Z (2011) Cancer support group participation in the United Kingdom: a national survey. Support Care Cancer 19:675–683
Sautier L, Mehnert A, Höcker A, Schilling G (2014) Participation in patient support groups among cancer survivors: do psychosocial and medical factors have an impact? Eur J Cancer Care (Engl) 23:140–148
Pascoe S, Edelman S, Kidman A (2000) Prevalence of psychological distress and use of support services by cancer patients at Sydney hospitals. Aust N Z J Psychiatry 34:785–791
Stickel A, Gröpper S, Pallauf A, Goerling U (2015) Patients’ knowledge and attitudes towards cancer peer support programs. Oncology 89:242–244
Beehler GP, Rodrigues AE, Kay MA, Kiviniemi MT, Steinbrenner L (2014) Perceptions of barriers and facilitators to health behavior change among veteran cancer survivors. Mil Med 179:998–1005
R Development Core Team (2005). R: A language and environment for statistical computing. R Foundation for Statistical Computing, Vienna, Austria. ISBN 3–900051–07-0. http://www.R-project.org. Accessed 30 Oct 2016
Morita T, Kizawa Y (2013) Palliative care in Japan: a review focusing on care delivery system. Curr Opin Support Palliat Care 7:207–215
The Department of Health (2017) Palliative Care. http://www.health.gov.au/palliativecare Accessed 20 January 2017
Elwyn TS, Fetters MD, Sasaki H, Tsuda T (2002) Responsibility and cancer disclosure in Japan. Soc Sci Med 54:281–293
Tedeschi RG, Calhoun LG (1996) The Posttraumatic Growth Inventory: measuring the positive legacy of trauma. J Trauma Stress 9:455–471
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All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee, and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
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Hatano, Y., Mitsuki, S., Hosokawa, T. et al. Japanese Cancer Survivors’ Awareness of and Participation in Support Groups. J Canc Educ 33, 208–213 (2018). https://doi.org/10.1007/s13187-017-1177-8
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DOI: https://doi.org/10.1007/s13187-017-1177-8