The Meaning of Surveillance in Women With a Hereditary Risk of Breast Cancer: A Hermeneutic Phenomenological Study

Aim To explore the meaning of lived experiences of women with a hereditary risk of breast cancer who participate in surveillance of their breasts with magnetic resonance imaging. Design Hermeneutic phenomenology. Methods Interviews on two occasions were made with 14 women in the surveillance programme. The verbatim transcripts were analysed according to van Manen. The analysis was an insightful iterative process and provided a sensitive understanding of the meaning of lived experiences. Results Women's lived experiences were that surveillance was constantly present in their lives. Their experiences implied ‘needing to put on a mantle’, ‘not wanting to go through this alone’ and ‘wanting to keep their breasts’. The women created an invisible mantle that they put on when necessary to protect themselves. They wished to be open about their experiences and longed to be truly listened to. The women needed confirmation that they had the ethical right to their values and the choice they had made to participate in the programme. They were aware of the consequences of their decision, but they valued their breasts as a part of their identity and wanted to keep their breasts to remain who they were. Implications for the Profession and Care The understanding of the meaning of lived experiences of women in surveillance is vital for the development of person‐centred care practice. Person‐centredness should be integrated in the surveillance programme guidelines. Impact The study provides an understanding of the meaning of surveillance from the perspective of women. The evidence that women want to keep their breasts to preserve themselves as a person questions the norm of prioritising the bio‐medical perspective in women's care. Reporting Method COREQ. Patient or Public Contribution No patient or public contribution.