Institutionen för neurobiologi, vårdvetenskap och samhälle / Department of Neurobiology, Care Sciences and Society
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