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Erschienen in: Supportive Care in Cancer 5/2011

01.05.2011 | Original Article

Cancer support group participation in the United Kingdom: a national survey

verfasst von: Clare Stevinson, Anne Lydon, Ziv Amir

Erschienen in: Supportive Care in Cancer | Ausgabe 5/2011

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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.
Literatur
2.
Zurück zum Zitat National Institute for Clinical Excellence (2004) Improving supportive and palliative care for adults with cancer. NICE, London National Institute for Clinical Excellence (2004) Improving supportive and palliative care for adults with cancer. NICE, London
3.
Zurück zum Zitat Gottlieb BH, Wachala ED (2007) Cancer support groups: a critical review of empirical studies. Psychooncology 16:379–400PubMedCrossRef Gottlieb BH, Wachala ED (2007) Cancer support groups: a critical review of empirical studies. Psychooncology 16:379–400PubMedCrossRef
4.
Zurück zum Zitat Zabalegui A, Sanchez S, Sanchez PD, Juando C (2005) Nursing and cancer support groups. J Adv Nurs 51:369–381PubMedCrossRef Zabalegui A, Sanchez S, Sanchez PD, Juando C (2005) Nursing and cancer support groups. J Adv Nurs 51:369–381PubMedCrossRef
5.
Zurück zum Zitat Campbell HS, Phaneuf MR, Deane K (2004) Cancer peer support programs—do they work? Patient Educ Couns 55:3–15PubMedCrossRef Campbell HS, Phaneuf MR, Deane K (2004) Cancer peer support programs—do they work? Patient Educ Couns 55:3–15PubMedCrossRef
6.
Zurück zum Zitat Hoey L, Ieropoli SC, White VM, Jefford M (2008) Systematic review of peer-support programs for people with cancer. Patient Educ Couns 70:315–337PubMedCrossRef Hoey L, Ieropoli SC, White VM, Jefford M (2008) Systematic review of peer-support programs for people with cancer. Patient Educ Couns 70:315–337PubMedCrossRef
7.
Zurück zum Zitat 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):785–791PubMed 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):785–791PubMed
8.
Zurück zum Zitat Plass A, Koch U (2001) Participation of oncological outpatients in psychological support. Psychooncology 10:511–520PubMedCrossRef Plass A, Koch U (2001) Participation of oncological outpatients in psychological support. Psychooncology 10:511–520PubMedCrossRef
9.
Zurück zum Zitat Krizek C, Roberts C, Ragan R, Ferrara JJ, Lord B (1999) Gender and cancer support group participation. Cancer Pract 7(2):86–92PubMedCrossRef Krizek C, Roberts C, Ragan R, Ferrara JJ, Lord B (1999) Gender and cancer support group participation. Cancer Pract 7(2):86–92PubMedCrossRef
10.
Zurück zum Zitat 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):150–157PubMedCrossRef 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):150–157PubMedCrossRef
11.
Zurück zum Zitat 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):14–29PubMedCrossRef 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):14–29PubMedCrossRef
12.
Zurück zum Zitat 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):2092–2096PubMedCrossRef 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):2092–2096PubMedCrossRef
13.
Zurück zum Zitat Taylor S, Falke RL, Shoptaw SJ, Lichtman RR (1986) Social support, support groups and the cancer patient. J Consult Clin Psychol 54(5):608–615PubMedCrossRef Taylor S, Falke RL, Shoptaw SJ, Lichtman RR (1986) Social support, support groups and the cancer patient. J Consult Clin Psychol 54(5):608–615PubMedCrossRef
14.
Zurück zum Zitat Deans G, Bennett-Emslie GB, Weir J, Smith DC, Kaye SB (1988) Cancer support groups—who joins and why? Br J Cancer 58:670–674PubMedCrossRef Deans G, Bennett-Emslie GB, Weir J, Smith DC, Kaye SB (1988) Cancer support groups—who joins and why? Br J Cancer 58:670–674PubMedCrossRef
15.
Zurück zum Zitat Montazeri A (1996) A descriptive study of a cancer support group. Eur J Cancer Care 5(1):32–37CrossRef Montazeri A (1996) A descriptive study of a cancer support group. Eur J Cancer Care 5(1):32–37CrossRef
16.
Zurück zum Zitat 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 75:1275–1279CrossRef 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 75:1275–1279CrossRef
17.
Zurück zum Zitat Docherty A (2004) Experience, functions and benefits of a cancer support group. Patient Educ Couns 55:87–93PubMedCrossRef Docherty A (2004) Experience, functions and benefits of a cancer support group. Patient Educ Couns 55:87–93PubMedCrossRef
18.
Zurück zum Zitat 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):321–334PubMedCrossRef 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):321–334PubMedCrossRef
19.
Zurück zum Zitat Macmillan Cancer Support (2007) Directory of cancer self-help and support and user groups. Macmillan Cancer Support, London Macmillan Cancer Support (2007) Directory of cancer self-help and support and user groups. Macmillan Cancer Support, London
20.
Zurück zum Zitat Dillman D (2000) Mail and Internet surveys: the tailored design method. Wiley, New York Dillman D (2000) Mail and Internet surveys: the tailored design method. Wiley, New York
21.
Zurück zum Zitat 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 324:1183–1192CrossRef 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 324:1183–1192CrossRef
22.
Zurück zum Zitat 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 25:152–168PubMedCrossRef 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 25:152–168PubMedCrossRef
23.
Zurück zum Zitat 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):141–146PubMedCrossRef 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):141–146PubMedCrossRef
24.
Zurück zum Zitat Lieberman M, Yalom ID, Miles MB (1973) Encounter groups: first facts. Basic Books, New York Lieberman M, Yalom ID, Miles MB (1973) Encounter groups: first facts. Basic Books, New York
25.
Zurück zum Zitat Evans NJ, Jarvis PA (1986) The group attitude scale: a measure of attraction to group. Small Group Res 17:203–216CrossRef Evans NJ, Jarvis PA (1986) The group attitude scale: a measure of attraction to group. Small Group Res 17:203–216CrossRef
26.
Zurück zum Zitat Bottomley A (1995) The development of the Bottomley Cancer Social Support Scale. Eur J Cancer Care 4:127–132CrossRef Bottomley A (1995) The development of the Bottomley Cancer Social Support Scale. Eur J Cancer Care 4:127–132CrossRef
27.
Zurück zum Zitat 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 12:33–46CrossRef 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 12:33–46CrossRef
28.
Zurück zum Zitat 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 14:373–386PubMedCrossRef 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 14:373–386PubMedCrossRef
29.
Zurück zum Zitat Executive S (2006) Scottish Index of Multiple Deprivation General Report. Scottish Executive, Edinburgh Executive S (2006) Scottish Index of Multiple Deprivation General Report. Scottish Executive, Edinburgh
30.
Zurück zum Zitat Welsh Assembly (2008) Welsh Index of Multiple Deprivation Summary Report. Welsh Assembly, Cardiff Welsh Assembly (2008) Welsh Index of Multiple Deprivation Summary Report. Welsh Assembly, Cardiff
31.
Zurück zum Zitat 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 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
32.
Zurück zum Zitat Bauman L, Gervey R, Siegel K (1992) Factors associated with cancer patients participation in support groups. J Psychosoc Oncol 10(3):1–20CrossRef Bauman L, Gervey R, Siegel K (1992) Factors associated with cancer patients participation in support groups. J Psychosoc Oncol 10(3):1–20CrossRef
33.
Zurück zum Zitat 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 16:1039–1045PubMedCrossRef 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 16:1039–1045PubMedCrossRef
34.
Zurück zum Zitat 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):940–947PubMedCrossRef 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):940–947PubMedCrossRef
35.
Zurück zum Zitat 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):2565–2576PubMedCrossRef 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):2565–2576PubMedCrossRef
36.
Zurück zum Zitat 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):1417–1423PubMedCrossRef 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):1417–1423PubMedCrossRef
37.
Zurück zum Zitat 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):2577–2590PubMedCrossRef 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):2577–2590PubMedCrossRef
38.
Zurück zum Zitat 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):1217–1227PubMedCrossRef 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):1217–1227PubMedCrossRef
39.
Zurück zum Zitat 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 45:195–198CrossRef 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 45:195–198CrossRef
Metadaten
Titel
Cancer support group participation in the United Kingdom: a national survey
verfasst von
Clare Stevinson
Anne Lydon
Ziv Amir
Publikationsdatum
01.05.2011
Verlag
Springer-Verlag
Erschienen in
Supportive Care in Cancer / Ausgabe 5/2011
Print ISSN: 0941-4355
Elektronische ISSN: 1433-7339
DOI
https://doi.org/10.1007/s00520-010-0887-9

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