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Change and continuity : the experience of living with a terminal illness O’Brien, Patti

Abstract

While participation in meaningful occupation has been shown to positively influence subjective health and well-being, there has been a neglect of the experience and meaning of occupation for palliative care clients to guide Occupational Therapists (O.T.s) in defining their role in this practice area. The intent of this study was to explore the experience and meaning of occupation for individuals with a terminal illness and to examine how different dimensions of their environment (social, physical, cultural or institutional) influenced their experience. A qualitative research approach was implemented to explore the unique perspectives of the participants. In-depth, semi-structured interviews were completed with nine individuals diagnosed with a terminal illness, such as cancer or AIDS. Two main themes emerged from the stories of the study participants. The first theme 'The Impact of Illness on Daily Life' outlines the changes following diagnosis in the participants' approaches to life, relationships, changing ability to engage in meaningful occupation, and independent living. The second theme 'Shrinking Worlds: The Importance of Home, Neighbourhood and Community Resources' describes the increasing significance and changing meanings of various spaces making up the context of the participants' lives. The manner in which these individuals restructured and renegotiated their environment to accommodate their changing physical, social and financial needs are also discussed. The participants described many losses as a result of decreased involvement in meaningful roles and occupations. Challenges related to living with a terminal illness (and specifically participating in occupation) were a result not only of their illness but also dimensions of their environment which mediated their experience (for example, social policies, the meaning of spaces, attitudes of others and availability of supports). Participants used a multitude of strategies to remain engaged in meaningful occupations and roles, despite their changing abilities, and described many benefits of this continued involvement. Strategies included applying energy conservation techniques, residential relocation, utilizing equipment and services and discovering new activities in which to become engaged. The findings from the research inform theoretical ideas around occupation and the environment as well as the role of O.T.s in working with individuals who are living with a terminal illness. Specifically, issues related to client-centred practice, loss and enabling occupation are discussed in this paper. Finally, limitations of the study and directions for future research are outlined.

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