Ontology highlight
ABSTRACT: Objective
To characterize how survivors of cancer define participation. Design
Cross-sectional qualitative study. Setting
Participants were enrolled from a large academic medical center in the Midwestern United States. Interviews were conducted over Zoom or phone. Participants
Survivors of cancer (N=40) with brain, breast, colorectal, or lung cancer (n=10 per group). Participants were purposively sampled to maximize variation in the study sample. Participant ages ranged from 26-83 years, with a mean age of 55 years. Seventy percent of participants were receiving active cancer treatment at the time of the interview. Interventions
Not applicable. Main Outcome Measures
Participant perspectives gathered from 1-on-1 semistructured interviews. Qualitative description and thematic analysis were used to analyze interview transcripts and develop themes from the data. Results
Survivors described participation as doing valued activities and highlighted 4 common aspects: (1) control; (2) social connection; (3) engaging in various contexts; and (4) cultivation of joy and purpose. Fully participating in life involved being able to do what they want to do without restrictions or limitations. Survivors’ perspectives of control outlined how competence, choice, adaptations, and locus of control influence broader feelings of control and participation. Interviews highlighted that participation remains central to daily life among survivors of cancer. Conclusions
Rehabilitation researchers and clinicians need to establish a standard and comprehensive definition of participation. Rehabilitation providers need to consistently evaluate how participation is affected among survivors of cancer and use measures that include core aspects of participation identified in this study and previous research. Comprehensively defining participation will improve the design and selection of measurement tools and support comprehensive assessment of survivor experiences.
SUBMITTER: L'Hotta A
PROVIDER: S-EPMC9482024 | biostudies-literature | 2022 Jul
REPOSITORIES: biostudies-literature