The project gesa-K "Gesundheitskompetenz, Selbsthilfeaktivitäten und Versorgungserfahrung von Menschen mit Krebs" ("Health literacy, self-help activities and health care experience of people with cancer") aims to measure the health literacy and the health care experiences of people with cancer and their relatives. The results of this study will provide information about how self-help activities and other support measures may improve the health literacy and coping behaviour of cancer patients.
For most people, a diagnosis of cancer is a serious experience that confronts them and those close to them with emotional stress and life-changing changes. confronted with emotional stress and life-changing changes. Oncological oncological care, i.e. the specialist treatment and psychosocial care of cancer patients, has been greatly expanded and improved in Germany in recent years. Nevertheless there are still a lot to be done, especially in the emotional and social support of cancer patients and their families. and their families. This already begins with the diagnosis, the communication of the diagnosis, the accompaniment during therapy and rehabilitation - including the treatment of the patient. therapy and rehabilitation - including the decisions for or against different therapy options - to the different treatment options - to the questions of everyday life, occupation, rights or even possible or even the possible financial losses.
People with cancer are therefore confronted with complex decisions every day in dealing with their disease - from the choice of treatment options to finding the right contact person. finding the right people to talk to. In order to make informed health-related decisions, health literacy is essential.
Health Literacy has been defined by WHO as the cognitive and social skills, which determine the motivation and ability of individuals to gain access to, understand and use information in ways which promote and maintain good health. Support groups offer a possibility to help patients coping with the disease and to help guiding patients through the health care system.
However, there is a lack of studies exploring patients' experiences with their health-care as well as the interaction between self-help and health literacy in the context of oncological care. In addition, it has not been measured yet to what extend the integration of self-help into the professional oncological care system has been implemented.
The gesa-K project examines the empowerment of cancer patients in terms of coping (processing the disease) and self-management. Within this, beneficial and obstructive factors for a high or low health literacy should be identified in the framework of the experiences of cancer patients.
In this context, this study should contribute information on how cancer patients experience and assess the notification of the diagnosis, the information and clarification, and advice and support. It also examines what kind of support services are provided to cancer patients and their relatives (for example psycho-oncology, social counselling, self-help-groups, etc.), and with what acceptance and effects those are used.
In detail, gesa-K aims to give answers to the following questions:
What experiences do people with cancer have with their (psychosocial) care and how do they assess it, what desires and needs result from it?
Which factors contribute to health literacy of people with cancer, and which measures (counseling, training, self-help-groups etc.) can be used to increase health literacy?
By what means do people with cancer find themselves in a cancer self-help-group, what are the requirements for self-help activity, how do the health care system and the cancer centres contribute to mediating self-help?
What effects can self-help groups achieve among participants, especially in terms of their health literacy?
The cancer self-help groups (SHG) and organizations (SHO) have a special role in this event, as they not only have a wide distribution, but also a high degree of organization and a close integration with the cancer centres in Germany. However, there is only little systematic knowledge and experience regarding the integration of SHG to the indivual cancer centers and to the (cancer) care system in general (e.g., oncology practices, rehab clinics, etc.). This includes both the individual level (patient) and the collective level (SHG).
Figure: Simplified Analytical Model
How well cancer SHGs are integrated into the cancer care system, is an important question for several reasons. First, SHGs address important issues of coping with illnesses and daily affairs that are far beyond medical advice and care. Secondly, staff at the care facilities are important informants about and mediators for SHGs. Third, the accumulated experience in SHGs helps to improve the care quality of cancer centers and treatment facilities.
The project is divided into three sections. In the first section, interviews were conducted with eleven leaders of cancer SHGs and boards of cancer self-help organizations (January / February 2019).
In the second section, based on these interviews, a questionnaire for SHG leaders was developed (March / April 2019). This collects their experiences from their group work in order to develop a questionnaire for cancer patients. cancer patients. The group leaders are also asked for their assessment of the integration of self-help in the oncological care system and cooperation with professionals. in the oncology care system and the cooperation with professionals. Between June and August the SHG leaders were contacted via the House of Cancer Self-Help and the and via the federal cancer self-help organisations and the state cancer societies, to participate in the survey. This survey has now been completed. The original target of The original target of 250 SHG leaders was well exceeded with over 300 participants.
In the third step followed - delayed by the Corona crisis - by a patient survey from 15 October 2020 to 13 September 2021, to assess the health literacy and care experience of at least of at least 1,000 people affected by cancer. The patient survey was aimed at both "self-help active" patients and those affected by cancer. patients as well as patients who are not members of SHGs. Participation was online. Alternatively, a questionnaire could be requested in paper form. Slightly more than 1,100 people participated.
The results should serve to increase the patient centeredness and needs-based care, as well as to improve the counselling and support of cancer patients and their relatives. It should also assess the strengths and weaknesses of collaborative cancer self-help in the context of oncological care. During the project, we will publish the new results from each phase on this website.
Research Team (IMS):
Dr. Christopher Kofahl (Project Manager)
Dr. Jens Klein
Elâ Ziegler, M.Phil.
Elâ Ziegler, M.Phil.
University Medical Center Hamburg-Eppendorf
Institute of Medical Sociology
Martinistraße 52, W37
Phone: (040) 7410 54868