Encounters for learning and participation in breast cancer care

Sammanfattning: The overall aim of this thesis, is to increase the understanding of how women’s well-being, learning and participation during their breast cancer trajectory, especially in the context of short hospital stays, can be supported. The studies were conducted during two periods, with two different foci: Project I (study I-III) evaluated women’s well-being in a setting with short hospital stays, after breast cancer surgery and increased continuity care. Project II (study IV-V) explored the experience and perceptions of how women learn and participate during a breast cancer trajectory in a day-surgery context. In Project I (study I-III), patients were treated according to one of three care models: Established care, Early hospital discharge with drain in place and access to contact nurse, and Continuity care at a breast clinic with reduced hospital stay. The patients’ perceptions of the disease, treatment and care and their Sense of Coherence (SOC) were evaluated with questionnaires. Patients with a reduced hospital stay were compared to patients treated in the Established care model. The hospital stay was reduced from six to two-three days. The length of the hospital stay was well accepted by the patients and did not have any effect on the patients’ self-rated well-being. The patients’ well-being and SOC before surgery was a predictor of their well-being after surgery. Those who preferred a shorter hospital stay were younger, had received less extensive surgery, were more often cohabitants and rated a stronger SOC. The staff continuity was appreciated and increased the possibility to meet the needs of the patients. In Project II (study IV-V), women’s experiences of learning, understanding and participation were explored in individual interviews. Three themes illustrate learning. Interacting with a diversity of information illustrates the vast amount of information the women interact with. Bodily sensations and experiences from being part of events are important sources. Concealed and expressed understanding describes how women interpret information and conceal or express their understanding. Struggling to understand and manage the new life situation reveals an ongoing struggle of grasping and processing the information, in order to understand and manage the many different situations they confront in daily life and during treatment and care. The preunderstanding and driving forces of the women, time for contemplation and dialogue with staff, were also essential features in this struggle. The women’s understanding affected their participation in the care. Three main themes illustrate how women perceive their participation. Respectful and personal encounters concerns how a respectful treatment from health care staff contributes to a feeling of being “seen” as a human and support participation. Part-owner in decision making focuses on the women’s varied will and needs to participate in treatment decisions. Striving to manage treatment, care and self-care concerns the need to manage self-care for well-being in daily life and during treatment and care at the hospital. Patients must be recognized as unique human beings, with varying needs of participation and learning, related to their understanding. A new approach is suggested, including patients as partners, and the health care staff as participants, in care and treatment. Dialogue with health care staff is a central prerequisite for the understanding and participation of patients, especially in the context of short hospital stays. This calls for a new kind of training programs, focusing on patient learning, for staffs and patients.