Occupational Engagement and Quality of Life for People Living at Home with Advanced Cancer
Abstract
Background:
Worldwide the number of people living with advanced cancer is growing, and due to improved cancer treatment, people are able to live for extended periods with advanced cancer. Cancer at an advanced stage can have a profound influence on the lives of those affected and may lead to reduced quality of life. A consequence may be that death becomes a present factor, influencing possible hopes and dreams the individual might have.
This research project and its studies are framed within the larger ‘Activity, Cancer and Quality of life at Home Project, which employed different research methods to describe and explore occupational needs, and to gain insight to subjective experiences of complex situations of individuals. The overall objective of the research in this dissertation was to enhance the understanding of occupational engagement and perceived quality of life for people with advanced cancer who live at home. The project is based on a qualitative descriptive and explorative design employing different qualitative methods, and consists of the following three studies:
Study I:
The aim was to describe and explore how people with advanced cancer manage occupations in their everyday lives. Semi-structured interviews and content analysis were employed. Seventy-three participants took part in this study.
Findings: The findings suggest that people with advanced cancer experience occupational difficulties. The participants developed strategies to compensate for these difficulties; however some strategies proved to be counterproductive, since they took time and energy from more personally meaningful occupations, which influenced the participants’ quality of life.
Study II:
The aim was to explore how people with advanced cancer perceive quality of life. Semistructured interviews and a thematic approach were used. Ten participants took part in this study.
Findings: The findings suggest that people with advanced cancer perceive quality of life as closely related to being able to maintain continuity while adjusting to experience of loss and discontinuity in daily life at home. The findings also indicate that quality of life was associated with belonging for people with advanced cancer.
Study III:
By drawing on empirical findings and the theoretical concept of belonging, the aim was to gain a deeper understanding of the ways in which belonging is perceived as an aspect of quality of life by people with advanced cancer who live at home. Nine participants took part in this study using a combination of semi-structured interviews and photo-elicitation. Data from 18 interviews and 77 photographs were analyzed thematically, drawing on four dimensions of belonging.
Findings: The findings suggest that maintaining a sense of belonging was associated with quality of life and was identified as a complex and challenging process when living with advanced cancer. The data support the theoretical dimensions of belonging described in occupational science and contribute with knowledge about artefacts as mediators of belonging.