Abstract
Purpose
Existing data on cancer support groups come largely from small studies in specific geographic areas, particularly in the UK. This study was designed on a national scale to describe the characteristics of support group members and examine associations between group and participant variables and perceived outcomes.
Materials and methods
A postal survey of support groups in the UK was performed with group leaders asked to distribute questionnaires to their members. Questionnaires included sections for demographic and medical information, group attendance, perceived outcomes and psychosocial variables.
Results
From an original pool of 2,883 members from 206 groups, a total of 748 patient members within 172 support groups participated. Females comprised 68.2% of the sample, mean age was 65.4 ± 10.2 years, and 73.3% were retired. Post-secondary education was reported by 42.2%, and the proportion living in the two least deprived quartiles was 35.6%. Participants were a mean of 76.5 ± 67.4 months post-diagnosis, with 60.6% in remission. Breast cancer was the most common diagnosis (48.8%). The mean length of membership was 56.0 ± 54.7 months. Frequency of perceived benefits was positively associated with length of membership and attendance record. Psychosocial outcomes did not differ based on group variables.
Conclusion
Support group participants are more often female, white, retired, married and long-term cancer survivors. Contrary to earlier studies, support group members do not tend to have high educational achievements or socioeconomic status. Perceived benefits are highest among long-term members and regular attenders.
Similar content being viewed by others
References
Cancer Research UK (2008) Cancer stats. Available via http://info.cancerresearchuk.org/cancerstats/incidence/prevalence, accessed 16/09/2009
National Institute for Clinical Excellence (2004) Improving supportive and palliative care for adults with cancer. NICE, London
Gottlieb BH, Wachala ED (2007) Cancer support groups: a critical review of empirical studies. Psychooncology 16:379–400
Zabalegui A, Sanchez S, Sanchez PD, Juando C (2005) Nursing and cancer support groups. J Adv Nurs 51:369–381
Campbell HS, Phaneuf MR, Deane K (2004) Cancer peer support programs—do they work? Patient Educ Couns 55:3–15
Hoey L, Ieropoli SC, White VM, Jefford M (2008) Systematic review of peer-support programs for people with cancer. Patient Educ Couns 70:315–337
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(5):785–791
Plass A, Koch U (2001) Participation of oncological outpatients in psychological support. Psychooncology 10:511–520
Krizek C, Roberts C, Ragan R, Ferrara JJ, Lord B (1999) Gender and cancer support group participation. Cancer Pract 7(2):86–92
Bui L, Last L, Bradley H, Law CH, Maier BA, Smith AJ (2002) Interest and participation in support group programs among patients with colorectal cancer. Cancer Nurs 25(2):150–157
Ussher J, Kirsten L, Butow P, Sandoval M (2008) A qualitative analysis of reasons for leaving, or not attending, a cancer support group. Soc Work Health Care 47(1):14–29
Katz D, Koppie TM, Wu D, Meng MV, Grossfeld GD, Sadesky N, Lubeck DP, Carroll PR (2002) Sociodemographic characteristics and health related quality of life in men attending prostate cancer support groups. J Urol 168(5):2092–2096
Taylor S, Falke RL, Shoptaw SJ, Lichtman RR (1986) Social support, support groups and the cancer patient. J Consult Clin Psychol 54(5):608–615
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
Montazeri A (1996) A descriptive study of a cancer support group. Eur J Cancer Care 5(1):32–37
Slevin ML, Nichols SE, Downer SM, Wilson P, Lister TA, Arnott S, Maher J, Souhami RL, Tobias JS, Goldstone AH, Cody M (1996) Emotional support for cancer patients: what do patients really want? Br J Cancer 75:1275–1279
Docherty A (2004) Experience, functions and benefits of a cancer support group. Patient Educ Couns 55:87–93
Grande G, Myers LB, Sutton SR (2006) How do patients who participate in cancer support groups differ from those who do not? Psychooncology 15(4):321–334
Macmillan Cancer Support (2007) Directory of cancer self-help and support and user groups. Macmillan Cancer Support, London
Dillman D (2000) Mail and Internet surveys: the tailored design method. Wiley, New York
Edwards P, Roberts I, Clarke M, DiGuiseppi C, Pratap S, Wentz R, Kwan I (2002) Increasing response rates to postal questionnaires: systematic review. Br Med J 324:1183–1192
Gore-Felton C, Koopman C, Bridges E, Thoresen SD (2002) An example of maximizing survey return rates: methodological issues for health professionals. Eval Health Prof 25:152–168
Rankin N, Williams P, Davis C, Girgis A (2004) The use and acceptability of a one-on-one peer support program for Australian women with early breast cancer. Patient Educ Couns 53(2):141–146
Lieberman M, Yalom ID, Miles MB (1973) Encounter groups: first facts. Basic Books, New York
Evans NJ, Jarvis PA (1986) The group attitude scale: a measure of attraction to group. Small Group Res 17:203–216
Bottomley A (1995) The development of the Bottomley Cancer Social Support Scale. Eur J Cancer Care 4:127–132
Watson M, Law M, dos Santos M, Greer S, Baruch J, Bliss J (1994) The Mini-Mac: further development of the mental adjustment to cancer scale. J Psychosoc Oncol 12:33–46
Wright EP, Kiely M, Johnston C, Smith AB, Cull A, Selby PJ (2005) Development and evaluation of an instrument to assess social difficulties in routine oncology practice. Qual Life Res 14:373–386
Executive S (2006) Scottish Index of Multiple Deprivation General Report. Scottish Executive, Edinburgh
Welsh Assembly (2008) Welsh Index of Multiple Deprivation Summary Report. Welsh Assembly, Cardiff
Noble M, McLennan D, Wilkinson K, Whitworth A, Barnes H, Dibben C (2008) The English indices of deprivation 2007. Communities and Local Government Publications, London
Bauman L, Gervey R, Siegel K (1992) Factors associated with cancer patients participation in support groups. J Psychosoc Oncol 10(3):1–20
Butow PN, Kirsten LT, Ussher JM, Wain GV, Sandoval M, Hobbs KM, Hodgkinson K, Stenlake A (2007) What is the ideal support group? Views of Australian people with cancer and their carers. Psychooncology 16:1039–1045
Avis M, Elkan R, Patel S, Walker B-A, Ankti N, Bell C (2008) Ethnicity and participation in cancer self-help groups. Psychooncology 17(9):940–947
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(10):2565–2576
Ernstmann N, Neumann M, Ommen O, Galushko M, Wirtz M, Voltz R, Hallek M, Pfaff H (2009) Determinants and implications of cancer patients’ psychosocial needs. Support Care Cancer 17(11):1417–1423
Seale C, Ziebland S, Charteris-Black J (2006) Gender, cancer experience and internet use: a comparative keyword analysis of interviews and online cancer support groups. Soc Sci Med 62(10):2577–2590
Bottorff JL, Oliffe JL, Halpin M, Phillips M, McLean G, Mroz L (2008) Women and prostate cancer support groups: the gender connect? Soc Sci Med 66(5):1217–1227
Montezeri A, Jarvandi S, Haghighat S, Vahani M, Sajadian A, Ebrahimi M, Haji-Mahmoodi M (2001) Anxiety and depression in breast cancer patients before and after participation in a cancer support group. Patient Educ Couns 45:195–198
Acknowledgements
This study was funded by Macmillan Cancer Support. The North Manchester and Bury Myeloma Support Group assisted with questionnaire pretesting.
Conflict of interest
Macmillan Cancer Support provides salary and infrastructure funding for staff at the Macmillan Research Unit and funded the current project as part of the core research programme. The authors retain control of all primary data and agree to allow the journal to review data if requested.
Author information
Authors and Affiliations
Corresponding author
Rights and permissions
About this article
Cite this article
Stevinson, C., Lydon, A. & Amir, Z. Cancer support group participation in the United Kingdom: a national survey. Support Care Cancer 19, 675–683 (2011). https://doi.org/10.1007/s00520-010-0887-9
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s00520-010-0887-9