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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.

BACKGROUND: Many older adult cancer survivors reduce their activity level during and after cancer treatment. Occupational therapy interventions need to flexibly address various obstacles to occupational engagement that survivors may face. OBJECTIVE: To describe the content of a participant-directed occupational therapy intervention for older adults with cancer. METHODOLOGY: Content analysis was used to describe the treatment session data from the experimental arm of a pilot randomized controlled trial in terms of activities addressed, obstacles reported, and treatment strategies utilized. RESULTS: Participants predominantly used the intervention to increase exercise engagement or address instrumental activities of daily living. The most common obstacles to occupational engagement included fatigue, finding time, weather, and pain. Regarding treatment strategies, 77% of participants chose to practice the activity with the occupational therapist, 42% requested a piece of equipment, and 11% modified the environment in order to increase activity engagement. CONCLUSION: Overall, the participant-directed intervention appears flexible enough to address various activities and obstacles to occupational engagement.

Seventeen breast cancer survivors completed a 6-week, telephone-delivered, behavioral activation/problem-solving intervention designed to reduce participation restrictions. A content analysis of the session data was conducted to identify the goals and patterns of goal attainment and to understand what women were trying to achieve in their recovery. The 17 women set 141 goals. Sixty-six (47%) of the goals reflected a desire to add a new activity to their routine and 75 (53%) of the goals reflected a desire to perform a routine activity more efficiently. The women primarily set goals to address challenges in exercising (24%), work (13%), nutrition (11%), instrumental activities of daily living (IADLs; 10%), stress management (9%), and social activities (9%). The women set an average of 8 goals and met 71% of their goals. The intervention shows promise in helping women set and achieve a number of functional goals as part of breast cancer recovery.

Older adult cancer survivors often experience disability after cancer treatment, but little is known about how they adjust their daily activities during recovery and their opinions about those adjustments. Forty-three cancer survivors older than 60 years completed an oral interview using standardized and semi-structured assessments of activity level and mood. Overall, participants had a 12% reduction in their activity level at 3 months post-treatment. Greatest reductions were seen for high physically demanding leisure activities (34% reduction) and social activities (16% reduction), with lesser reductions in instrumental (7% reduction) and low physically demanding leisure activities (4% reduction). Twelve percent reported clinically significant depressive symptoms and none met criteria for anxiety disorders. Although cancer treatment is only one factor affecting activity routines, it creates challenges and older adults often reconsider priorities regarding how to spend limited energy. A customized balance of energizing and energy-depleting activities may be most conducive to recovery after cancer treatment.

Despite remarkable advances in survival associated with modern chemotherapy for cancer, treatment side effects remain a major concern for patients and providers. Common side effects of chemotherapy include fatigue, anemia, nausea, pain, and other problems (National Cancer Institute, 2008). These side effects, along with the disease itself, can make it difficult for people to eat, sleep, exercise, and do their daily activities (Cusick, Lawler, & Swain, 1987; de Jong, Candel, Schouten, Abu-Saad, & Courtens, 2006; Given, Given, Sikorskii, & Hadar, 2007). Although many measures assess clinical and biological treatment outcomes, validated approaches to evaluating the impact of treatment on valued activities are few. This report describes a new measure, the Valued Activity Inventory for Adults with Cancer (VAI-AC), and presents analyses of its reliability and validity. Our research team has been developing telehealth interventions to help people undergoing chemotherapy find ways to maximize their ability to stay active during cancer treatment (Hegel, et al., 2010). We use problem-solving interventions, augmented by education about activity and environmental adaptation, to help people find ways to overcome challenges to their health and daily routines. In our work, we need to know what activities are important to our participants and how difficult they find those activities to be while undergoing chemotherapy. To meet this assessment need, we reviewed many instruments that measure activity performance of adults. Some instruments focused on mobility (Sayers, et al., 2004) or basic activities of daily living (Goodwin, Coleman, & Shaw, 2006) that are not as likely to be impaired in our population of outpatient cancer patients. Other tools were specifically developed only for women (Tulman & Fawcett, 2007) or for diagnoses other than cancer (Leidy, 1999). The available occupational therapy assessments (e.g., Canadian Occupational Performance Measure or the Activity Card Sort) were interview-based and too time-intensive for our purposes (Baum & Edwards, 2008; Law, et al., 1998). The Medical Outcomes Study SF-36 (Ware et al., 2007) is widely used to measure activity limitations that result from medical illness, yet it does not provide the opportunity to indicate which activities are personally valued or routinely performed by a participant. Because the above instruments did not meet our current need, we decided to modify an instrument (described below) that was successfully used as a clinical tool in another problem-solving intervention trial (Rovner, Casten, Hegel, Leiby, & Tasman, 2007). We named our modification the Valued Activity Inventory for Adults with Cancer (VAI-AC). The VAI-AC asks participants to rate two dimensions for each of 25 activity items (see appendix). First, participants rate the degree to which it is important that they are able to do the activity. Second, participants rate the degree to which it is difficult for them to do the activity while undergoing chemotherapy. The VAI-AC is a client-centered measure of activity limitations. If an activity is not important to the participant, then it does not get factored into the score. A similar procedure has been used to measure disability from low vision (Massof, et al., 2005) and from arthritis (Katz, Morris, & Yelin, 2006). Appendix The purpose of this analysis is to explore the psychometric properties of the VAI-AC. We asked three questions: (1) How consistent are participants in their designation of an activity as important to them versus not important to them? (2) How stable are participants’ reports of activity limitations over a 72-hour period? (3) Are activity limitations as measured by the VAI-AC correlated with established measures of physical and mental functioning and symptom intensity?

The purpose of this study was to document the degree to which a brief segment of an occupational therapy interview about favorite activities served as a window into personal identity and experience in clients with Parkinson's disease. Two-minute segments of videotaped interviews of 12 participants with Parkinson's disease were transcribed and analyzed. A verbal content measure was developed, its reliability tested, and its items correlated with participants' self-rated personality and mood. Overall, the inter-rater reliability for this verbal content measure was acceptably high, and many expected associations between participant verbal content and participant identity as related to personality and mood were found. The results tentatively suggest that the client's discussion of favorite activity participation, as well as the tone and frequency of the client's verbal communication, can provide insight into the identity of the client, and this information is available to the practitioner even for clients who have difficulty expressing their identities nonverbally. This exploratory study establishes a foundation for further research in the area of identity expression through verbal content in individuals with diminished nonverbal expressiveness.

Being able to engage in satisfying and effective interpersonal interactions is an important component of health. Parkinson's disease (PD) is an example of a chronic illness that can make social interactions difficult and awkward. The aim of this study was to explore the nature of the challenges people with PD face during social occupations. Following a collective case study design, two men and one woman each participated in two qualitative interviews. Dramaturgical analysis of the interview data was conducted to offer insight into why some interactions are problematic. Elements seen in the stories of problematic encounters included a dramaturgical challenge created by PD symptoms, resulting discomfort or confusion, and the adoption of an attitude or action to surmount the challenge. Using dramaturgical analysis to explore the occupational form of social interactions can develop knowledge about the facilitation of social well-being.