Catalyzing Research to Optimize Cancer Survivors’ Participation in Work and Life Roles

Abstract

Participation refers to a state of health in which a person is able to fully engage in roles and life situations. Adults living with and beyond cancer often report persistent participation restrictions that affect their productivity and quality of life. The American Occupational Therapy Foundation convened a group of scientists from seven different disciplines in a Planning Grant Collective (PGC) to stimulate research to identify scalable ways to preserve and optimize participation among cancer survivors. Participants identified challenges, prioritized solutions, and generated novel research questions that move beyond symptom and impairment mitigation as outcomes to identify interventions that improve participation in roles and life situations. This article summarizes the PGC discussion and recommendations regarding three challenges: (a) the dynamic and multi-faceted nature of participation, (b) a need to integrate the concept of participation within the culture of oncology, and (c) identification of priority areas in which new lines of research regarding participation would be most impactful.

Impact of cancer and cancer-related treatments on participation restrictions

“…generalize to resumption of roles and routines in daily life. The evidence suggests that changes in impairmentbased concerns do not generalize to changes in participation (Newman et al, 2019b). Of the small portion of the study sample that received cancer rehabilitation services, referrals were only linked to impairment-related concerns of mobility, lymphedema management, debility, and swallowing.…”

“…There have been multiple calls-to-action to better understand the nature and magnitude of disability in cancer populations (Alfano and Pergolotti, 2018; Newman et al., 2019b). The World Health Organization’s International Classification of Functioning, Disability, and Health describes disability as a multifactorial construct among body structures and function, activities and participation, and contextual factors (World Health Organization, 2001).…”

“…The World Health Organization’s International Classification of Functioning, Disability, and Health describes disability as a multifactorial construct among body structures and function, activities and participation, and contextual factors (World Health Organization, 2001). While characterization of cancer-related disability has been investigated in terms of impairment-focused outcomes (Newman et al., 2019b), few studies document implications of cancer and cancer treatment on other domains, including participation restrictions (Hunter et al., 2017).…”

“It takes a village to get through cancer,” A photo-elicitation study exploring lived experiences of community cancer survivors

“…Intentionally looking into the personal experiences of individuals diagnosed with cancer adds value to the body of literature. Newman et al. (2019) identified that the construct of participation involves a deeper understanding of various factors including cultural expectations.…”

Assessments used to measure participation in life activities in individuals with cancer: a scoping review

“…There has been a call to action for the promotion of strategies that facilitate return to work, school, and life for survivors of cancer [19]. However, evaluating participation in life activities in individuals with cancer is an underdeveloped component of cancer rehabilitation programs [20]. With the push to integrate this concept into the continuum of cancer care [20], understanding how participation is currently measured in this population is essential.…”