Abstract
Individuals with cancer experience occupational participation restrictions, but there is no consensus on how to measure this construct. The objective of this study is to describe the perspectives and preferences of individuals with cancer regarding participation measurement. Forty individuals with brain, breast, colorectal, and lung cancer provided feedback on three participation measures in semi-structured interviews. Through an iterative, team-based content analysis approach, interview text was coded using the study codebook and organized into themes. Core themes included (a) participation measures highlighted occupational priorities, (b) measuring participation can identify supportive care needs, (c) measures must balance thoroughness with speed of completion, (d) measurement timeframe varies by treatment phase, and (e) evaluating community engagement is not a priority for some individuals with cancer. Integrating participation measures into cancer care can support referrals to occupational therapy and supportive services. It is essential to consider time since cancer diagnosis and client priorities when selecting participation measures.
Plain Language Summary
Occupational participation focuses on an individual doing what they find important or meaningful in their daily life. Regular assessment of the occupational participation needs of people diagnosed with cancer is important, given their widespread daily life challenges. However, there is no information on preferred approaches for assessing occupational participation. We interviewed 40 people diagnosed with cancer to understand what they liked and disliked about participation surveys and the process of completing them. Key findings included that evaluating participation (a) helped participants reflect on their occupational priorities, (b) can help the medical team have a more holistic view of an individual’s needs and connect people with cancer with supportive services, and (c) should be done using brief yet thorough surveys. People diagnosed with cancer recommended less focus on community engagement and more focus on mental health in surveys. Individual priorities and phase of treatment should inform occupational participation survey selection.
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