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

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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.

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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.

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Correspondence to Clare Stevinson.

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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

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