1282 - EONS Poster - Patients’ learning and participation in their breast cancer care

Background

Patients’ participation in treatment and care is considered to increase their safety and well-being. There is a lack of knowledge about what participation means for the patients and how it can be supported in breast cancer care. A prerequisite for patients’ participation is their knowledge. Changing perspective, from patients’ information needs to their learning, can increase our understanding about how participation can be facilitated. The purpose of this study was to explore patients’ experiences of learning, understanding and participation in their breast cancer care.

Methods

Sixteen patients with breast cancer were interviewed. The interviews were analyzed according to abductive content analysis taking the perspective from learning theories.

Results

The first part of the study explored patients’ learning. The patients are forced to interact with a vast amount of information. Bodily sensations and experiences from being part of events are important sources. The information is interpreted to an understanding which is concealed or expressed which affect patient participation. The struggle to understand and manage the new life situation is an ongoing process for a long time. The preunderstanding and driving forces of the patients, time for contemplation and dialogue with staff, were essential features in this struggle⁽¹⁾. The second part explores patient participation. The concept of patient participation was defined differently by different patients and there was uncertainty about its meaning. The patients' understanding of their disease, treatment and care affected their participation. A prerequisite for participation was the respectful treatment from health care staff contributing to a feeling of being “seen” as a human being. The patients’ wishes varied as did their needs to participate in treatment decisions. Participation also meant a continuous struggle to manage self-care during a long period of time and access to health care is needed to support patients. ⁽¹⁾Engqvist Boman et al. Patients’ learning and understanding during their breast cancer trajectory. Patient Education and Counseling 100 (2017) 795–804.

Conclusions

New kinds of training programs for staff and patients are suggested, focusing on patients' learning and the new roles of partnership.

Clinical trial identification

Legal entity responsible for the study

Karolinska Institutet, Department of Learning, Informatics, Management and Ethics.

Funding

Karolinska Institutet in collaboration with the Regional Cancer Centre Stockholm-Gotland, Stockholm County Council.

Editorial Acknowledgement

Disclosure

All authors have declared no conflicts of interest.