Patients' participation during treatment and care of breast cancer – a possibility and an imperative

To explore how patients experience participation during treatment and care for breast cancer related to their understanding. Semi-structured individual interviews with 16 women diagnosed with breast cancer. Interpretative qualitative content analysis was performed. Three main themes describe patient participation. Theme 1 Respectful and personal encounters illustrates how the treatment from health care staff contributed to feelings of being “seen” as a human, a basis for participation. Theme 2 Part-owner in decision making describes the women's varied wishes of participating in treatment decisions. Theme 3 Striving to manage treatment, care and self-care concerns the need to manage self-care for well-being. Patient participation is both a possibility and an imperative. Patients must be recognized as unique human beings with varying needs of participation. Shared learning and understanding in dialogue with health care staff is a prerequisite. A novel approach where patients and health care staff are both partners and participants is presented. The results call for an initiation of training programs supporting pedagogical competence in staff and patients' learning in breast cancer care. Access to health care in the outpatient and the hospital settings is needed long term after treatment to support patient participation. •Patients' understanding of participation varies.•Respectful and personal encounters are prerequisites for patient participation.•All patients are part-owners in decision making in treatment and care.•Patients have different wishes of participating in treatment decisions.•Participation means a continuous long term endeavor to manage self-care.