gesa-K pursues the goal of illustrating the care of people with cancer and their everyday coping
as diverse and comprehensive as possible. To achieve this, we conduct interviews and surveys with members
of cancer self-help organisations (SHO), leaders of cancer self-help groups (SHG) and patients.
and patients.
In the first step (January / February 2019) we conducted focussed interviews with eleven members of Cancer-SHO and -SHG.
On the basis of these interviews in a second step ((March / April 2019) we developed a questionnaire for SHG leaders combined with a feedback loop with six expert members of the German Cancer Aid's Patient Advisory Board and the House of Cancer Self-Help.
In the third step (June - September 9th, 2019) we asked the leaders of the Cancer SHGs to participate by completing the questionnaire. The aim of this survey is to cover the manifold topics in SHGs of various cancer entities like experiences of cancer patients with their treatment and care, or coping with their disease. Based on this knowledge, a questionnaire for cancer patients will be developed, which shall measure their health literacy, their experiences with psychosocial care, and the possible benefits and effects of participating in a cancer SHG. In addition, the cooperation between SHGs and oncological care institutions and the integration of SHGs will be examined.
The survey with the SHG-Leaders is completed now. More than 300 persons participated, 279 of them
have administered the questionnaire completely. The questionnaire could be administered in an online
version, or alternatively, a paper questionnaire could be requested by e-mail. Administration took 36 minutes
on average (median). No personal data has been collected, and all information will be treated confidentially.
We thank all participants for their engagement and their very positive feedback
to this survey!
The questionnaire is only available in a German version, which can be downloaded here:
In the fourth step of this project, we originally wanted to survey about 4.000 cancer patients. The Corona crisis affected us severely here.
The survey was launched in October 2020 and ran until September 19th 2021. Over 1,100 cancer patients took part.
For this purpose, 80,000 flyers with project information and the access data for the online survey were sent to oncology centres, specialised practices, rehabilitation clinics, the cancer societies, cancer counselling centres and other care and counselling facilities,
with the request to hand these out to their patients to enable them to participate in this study.
To all who participated - thank you for your support!