Activities as resources when living with advanced cancer

Abstract: The overall aim of this thesis was to increase knowledge about how people with advanced cancer experience their engagement in activities and how such activities may be useful when living with life-threatening illness. This is explored with regard to creative activities in palliative occupational therapy and to self-chosen activities in everyday life. Given that improved treatment allows people with advanced cancer to live increasingly longer periods of time, it becomes important to support them in such circumstances. Gaining insight into the potential and the challenges of engagement in activities from the perspective of people with life-threatening illness may generate knowledge that can complement theoretical and practical foundations for the use of activities in therapeutic intervention and everyday life. The thesis includes four studies. In Study I the aim was to discover and characterize components of engagement in creative activity as occupational therapy for elderly people dealing with life-threatening illness from the perspective of clients and therapists (n = 15). This study was based on qualitative interviews analyzed using a constant comparative method. Study II aimed to investigate the meanings that people with advanced cancer ascribed to engaging in creative activity in palliative occupational therapy (n = 8). The data from qualitative interviews were analyzed using a phenomenological method. In Study III the aim was to describe and explore the daily activities of people with advanced cancer in relation to time, location, social interaction and experience (n = 45). The data were collected using semistructured diaries and qualitative interviews according to the Time Geographical Method. These data were analyzed using a constant comparative method. Study IV aimed to explore and understand how people with advanced cancer create meaning and handle everyday life through activity (n = 7). The data collection was based on a combination of qualitative interviews and participant observation. In this study an interpretive narrative approach was used for the analysis. The findings in Study I identified how clients and therapists contributed jointly in constructing a generous environment supporting engagement in activities. The findings suggested that engagement in creative activity enabled clients to create connections of past experiences with their present situation and connections reaching into a possible future. In Study II engagement in creative activities was found to ease living in proximity to death and to provide opportunities for creating new ways of living. This entailed ongoing processes for the participants, which involved confronting the consequences of advanced cancer, experimenting with ways to handle current challenges and acknowledging personal resources. Study III identified that the participants with advanced cancer spent most of their time at home. Their daily lives consisted primarily of self-care and leisure activities with limited social engagement. Establishing and maintaining rhythms of routine and change was found to be significant for the participants sense of satisfaction with daily life. The results of Study IV showed how the participants fashioned stories through daily activity that were useful to them in handling everyday life with advanced cancer. These narratives illustrated the challenges faced by the participants in creating desired stories in negotiation with their socio-cultural environment. Activities were identified as an arena for exploring contrasting feelings of health and severe illness and, in addition, for providing a familiar framework stimulating agency and life-confirming experiences. Taken together the findings identified various ways in which engagement in activities may provide opportunities to explore and work through consequences of advanced cancer. Engagement in activity was identified as stimulating the discovery of individual and sociocultural resources that the affected person could draw upon in daily life by taking agency, transcending grief and experiencing enrichment and completion in the face of impending death. These studies may contribute to the development of palliative care and to the support of people with advanced cancer as they explore ways to engage and use activities in the remainder of their lives.