Abstract
ObjectiveTo characterize how survivors of cancer define participation. DesignCross-sectional qualitative study. SettingParticipants were enrolled from a large academic medical center in the Midwestern United States. Interviews were conducted over Zoom or phone. ParticipantsSurvivors 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. InterventionsNot applicable. Main Outcome MeasuresParticipant 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. ResultsSurvivors 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. ConclusionsRehabilitation 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.
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