Who helps the leaders? Difficulties experienced by cancer support group leaders.

GOALS OF WORK: Cancer support groups are an important source of support for cancer patients, yet little is known about the challenges and training needs of both professionally trained and untrained leaders. The aim of this study was to discover the difficulties experienced and training desired by cancer support group leaders.

PATIENTS AND

METHODS

Twenty-seven leaders of 34 cancer support groups participated in focus groups or individual interviews. Groups were purposively selected as representative of 173 support groups identified in New South Wales which were for adults with cancer and/or their adult carers and were not therapeutic or education-only groups.

MAIN

RESULTS

Difficulties identified included dealing with people's different communication styles and needs; dealing with recurrence, metastases and death; practical issues, including resources, setting the programme and funding security; maintaining personal balance and preventing burn out; establishing group credibility; dealing with group cycles; and leading groups in rural areas. Leaders also identified benefits and rewards from group leadership such as contributing to others' well-being, self-development and insight into others' lives. Non-professionally trained leaders experienced more difficulties, particularly in dealing with group process and practical issues.

CONCLUSIONS

Difficulties identified were related both to working with a cancer population specifically and to working with groups in general. While some issues were common to both health professionals and non-health professionals, non-health professionals reported greater supportive needs. Clear guidelines, targeted training and development of better methods of support to reduce the stress and burn out experienced by group leaders are needed.