Breast cancer survivors' experiences of dealing with information during and after adjuvant treatment: A qualitative study

Aims and objectives To describe breast cancer (BC) survivors' experiences of participating in a 2-day educational programme (Breast Cancer School, BCS) and their critical reflection on information received during and after adjuvant treatment. The following research questions guided the study. How do BC survivors experience their participation in an educational programme? How do BC survivors experience the information trajectory during and after adjuvant treatment? Background BC is the most prevalent cancer among women in Norway. BC survivors have a substantial need for information about the disease, treatment and recovery. During the past few years, BC treatment in Norway has changed from inpatient- to outpatient-based treatment. Oncology nurses and oncologists are obliged to provide patients and their families with information, which has necessitated reorganisation of the procedures for providing information. New arenas such as the Breast Cancer School (BCS) offer the opportunity to learn from experts and fellow patients. Design Qualitative, descriptive design. Methods Focus groups with 20 BC survivors after having participated in the BCS were used to enable critical reflection. The COREQ checklist was followed to ensure rigour in the study. Results Two themes emerged from qualitative analysis: Balancing between the need for and the fear of information and Moving from a safe structure to lonely recovery. We identified differences between BC survivors in diversity, uniqueness and need for information. Continuity and expert knowledge provided by a primary oncology nurse and oncologists were highlighted as important. Conclusion The study reveals the need for information tailored to each BC survivor's unique needs. The BC survivors expressed both the need for and the fear of information. BCS takes both a systematic and individual approach to provide expert information, dialog and the opportunity to meet with fellow patients. The transition from the structure of the treatment to lonely recovery after the most intensive treatment was perceived as unsafe and challenging. BC patients' experiences must be continuously valued and used to improve educational programmes, care and treatment. Oncology nurses play an important part in the information chain and continuity. Relevance to clinical practice This study highlights the importance of including BC survivors in the design and evaluation of educational programmes. The provision of information and supportive care with continuity between oncology nurses and oncologists through the trajectory of treatment and care is crucial.