Again: An account of demoralisation in patients and families experiencing recurrence of cancer
Vivar, Cristina G
AIMS The aims of this thesis are to provide understanding of the psychosocial impact of recurrent cancer on patients and family members and to develop a substantive theory that explains the phenomenon of recurrence from a psychosocial perspective. BACKGROUND Cancer survival is increasing, and as people live longer, cancer recurrence is a real possibility. Recurrence has been described as one of the most stressful phases of cancer. Despite this reality, recurrence is poorly understood from a psychosocial perspective. Nurses, caring for patients and family members through their cancer trajectory, need to develop new understanding of how families experience recurrence in order to help them adapt to this phase of cancer. METHODS This grounded theory study was conducted in four cancer units of two hospitals in North of Spain. The sample consisted of 15 patients, 13 relatives, and 14 nurses. Triangulation of sources of data including family interviews, individual interviews, memos, and literature was used to provide a different but complementary view of the impact of cancer recurrence. Data collection and analysis were based on the constant comparative method of grounded theory. RESULTS A core category and three main categories have emerged from the data. The first main category, “again”- when fear of recurrence becomes reality, shows the suffering of cancer survivors and their family members after a diagnosis of recurrent cancer. The term “again” symbolises past suffering due to the fear of recurrence and new sufferings as a result of the diagnosis of recurrent cancer; it also implies a re-encounter with health services and nurses. Suffering has been found to take on a social dimension in that recurrence was not an individual experience, but also a family experience. In addition, the social construction of suffering impacted on the nurses caring for the patients and families. The second main category, identified as demoralisation as a response to the suffering of recurrence, refers to the nature of suffering after the families knew that cancer had come back. Demoralisation has been found to be an emotional reaction characterised by feelings of exhaustion, uncertainty, and a resurgence of the fear of death. Such a condition posed great challenges to the nurses who described caring for these patients as harder than caring for newly diagnosed cancer patients. The third main category, identified as rebuilding morale in the experience of recurrence, highlights families’ search for meaning in their experience of recurrence and how nurses shifted the focus of care when caring for patients with recurrent cancer. The core category of this study is demoralisation in cancer recurrence. It is the foundation of a proposed theory for family nursing which explains what the experience of cancer recurrence involves for patients and families, and proposes a psychosocial framework for the management of demoralisation in families facing recurrent cancer. CONCLUSIONS This thesis contributes to new understanding of the psychosocial impact of cancer recurrence on families and the nurses’ experiences of caring during the recurrent phase of cancer. The re-conceptualisation of demoralisation brings an original understanding of the concept, which has been unpublished and unexplored in cancer nursing so far.