Differences in illness-related knowledge of breast cancer patients according to their involvement in self-help groups

Abstract

Objective. There is little evidence of the gain in illness-related knowledge obtained in breast cancer self-help groups. This paper seeks to explore whether participants in self-help groups know more about breast cancer than non-participants and to examine the level of knowledge of leaders of self-help groups in comparison to the other two groups. Methods. A sample of 727 women affected by breast cancer was interviewed with a self-administered questionnaire assessing knowledge on disease, prevention, and aftercare. The interviewing took place during three different surveys conducted between 2005 and 2009. The data of the second and third survey were used in order to create a larger data base and to include self-help group leaders. Results. Participants in self-help groups knew significantly more than non-participants, although only in the subtests lymph edema and breast-examination. Leaders of support groups scored highest in all subtests. Involvement in a support group was most decisive for respondents’ knowledge, but other factors such as age, education, and medical history also had effects. Conclusion. Self-help groups provide a considerable potential for acquiring illness-related knowledge. As the participation rate in German breast cancer self-help groups is still quite low, it seems reasonable to generate more interest in this kind of support.

Keywords::

• coping
• depression and anxiety in oncology patients
• illness-related knowledge
• quality of life
• women’s health

Acknowledgements

The authors would like to thank the German Federal Self-Help Organization for Women with Cancer for facilitating the survey within the organization.

Declaration of interest: This paper is based on a cohort study on the role of social and psychological factors in the course of breast cancer. It was supported by the German Research Association (Deutsche Forschungsgemeinschaft) under grant numbers GE1167/1–1 and GE1167/1–2. No financial or other conflict of interest was involved in this study.

Current knowledge on this subject

• Breast cancer self-help groups provide increased empowerment and agency, and they contribute to patients’ psychological well-being. But there is hardly any detailed evidence for knowledge differences between women who attend self-help groups and women who do not.

What this study adds

• Involvement in a self-help group influences the level of illness-related knowledge among breast cancer patients. Participants of support groups tend to know more than non-participants in some areas of knowledge.

• Leaders of support groups even more than participants benefit from their involvement. They had a significantly higher level of knowledge in all subtests. With their expertise, they are able to support the knowledge gain of the other participants of the group.