Scientific project leaders:
Dr. Milena von Kutzleben

Prof. Dr. med. Eduard Malik

Operative project leader:
Jana Niemann, EMPH

Research Associates:
Dr. rer. nat. Lena Dübbel (Co-PI)

Lisa Glaum

Artistic direction:

Laura Solar, pottery of sol

Funding duration:
2025 - 2029

Funding institution:
State of Lower Saxony as part of the Volkswagen Foundation's “zukunft.niedersachsen” program

Project description:
Endometriosis is a benign but chronic condition in which tissue similar to the lining of the uterus grows outside the uterus and can settle in various places in the body, e.g., on the ovaries, in the abdominal and pelvic area, on the intestines, or on the peritoneum. The disease is associated with a wide range of symptoms, including severe pain, and can have a massive impact on all areas of the lives of those affected. The prevalence in Germany is estimated to be up to 15%; however, diagnosis is often delayed, and many sufferers experience misdiagnosis, medical gaslighting, and stigmatization in the healthcare system.

This is where the project comes in: in a participatory arts-based research design, the (healthcare) experiences of participants living with endometriosis will be examined in the context of ceramics workshops. Through artistic processes in ceramics workshops, participants can express their experiences and emotions in a whole new way that is not exclusively language-based.

The experiences of the medical professionals and their beliefs and attitudes toward the disease were collected through qualitative interviews. The difficulties and limitations in diagnosing and treating this complex disease have also been explored.

Data analysis combines thematic analysis with reconstructive methods (e.g., metaphor analysis) from empirical social research.

The results of the project can serve to raise awareness of the needs and requirements of people with endometriosis and improve communication about the disease, both in the context of healthcare and at the societal level. In addition, the project offers an approach to critical health services research that examines and questions structural power relations and social injustices in healthcare and their societal implications.

The project is an initiative of the Mixed Methods Laboratory in the Prevention and Rehabilitation Research Division of the Department of Health Services Research at the University of Oldenburg. In addition to its research interests, the project also aims to test an innovative approach to health services research, thereby contributing to the expansion of its methodological repertoire.