Education about complementary and alternative medicine in cancer self-help groups by trained peers

Abstract

Purpose: On average, about 40 % of cancer patients use complementary and alternative medicine (CAM) in addition to conventional oncological treatment. As there is a high need for information, patients search for information about CAM and share also experiences with peers especially in self-help groups. In this study, we tested and evaluated an educational concept for group leaders in cancer self-help groups how to approach the topic of CAM in their peer-groups. Methods: The concept has been developed and piloted with health care professionals and representatives of self-help organisations. It aims to inform and discuss CAM in terms of scientific evidence, its possibilities and limits, to reflect user behavior and to inform how to find and evaluate reliable and evidence-based information sources. First, self-help group leaders were educated in an on-site training including various CAM topics aimed to conduct this in their self-help groups. Then, the educated group leader performed this concept in their groups. The concept was evaluated at the level of participants and group leaders with respect to acceptance, usefulness and satisfaction. In a six months follow-up we interviewed the participants by questionnaire to what extent they used the recommended tools and had profited from the program. Results: A total of n=50 interested group leaders conducted the educational program in their groups. Most common implementation barriers were organizational or structural problems and the feeling of being overwhelmed to manage the program in their groups. A total of n= 423 participants in the group were educated with this program by their group leaders. The majority felt satisfied with the educational program and improved their knowledge about CAM. At the six months follow-up significant more participants consulted their physicians to inform themselves about CAM and felt more confident in finding reliable information about CAM. Conclusions: In this observational study we were able to implement an educational concept how to approach CAM in cancer self-help groups. Due to some results showing that a substantial percentage of group leaders felt overstrained with the concept we suggest to integrate a CAM professional in the education with the groups. For the future, the effects of the program should be tested by a randomized trial.