Exploratory Study of Breast Cancer Survivors’ Lived Experience: Activity Engagement During and After Breast Cancer Treatment

RESEARCH QUESTION: What are the connections among survivors’ experiences participating in important activities during and after breast cancer treatment, their environment, and their occupational performance, as defined by the proportion of activities retained?

RATIONALE: Currently, the assumption is that impairments developed from treatments are the reason survivors have not retained previous activity levels. Without knowledge of survivors’ experiences of participating in meaningful activities, occupational therapists do not have sufficient information to develop interventions to restore survivors’ ability to participate in important activities.

DESIGN: Concurrent mixed-method design that included interpretive phenomenological analysis (IPA) as the primary method and descriptive quantitative analysis as the secondary method.

PARTICIPANTS: Ten women were recruited from an academic cancer center who were diagnosed with Stage I, II, or III breast cancer; consecutively received surgery, chemotherapy, and radiation; were between 40 and 65 yr old; and did not receive additional treatment for their cancer, excluding adjuvant therapy.

METHOD: Two semistructured interviews were conducted during the last week of radiation and 6 mo afterward. Modified scoring system of the Activity Card sort was completed and activity retention rate calculated during the first and last week of radiation and 3 and 6 mo afterward. Each participant assigned one of five categories (never done, do now as often as before breast cancer treatment, do less or differently than before breast cancer treatment, have not done since breast cancer treatment, or new activity) to each of the 80 activities listed.

ANALYSIS: Qualitative data were analyzed using IPA. Using Onwuegbuzie and Teddlie’s method to integrate qualitative and quantitative data, emerging themes were integrated with activity retention rates for each specific and global category and list of important activities.

RESULTS: Most participants were a minority (80%) and married (50%); had a child older than age 18, attended some college (70%), Stage II cancer (70%), hormone positive cancer (60%), 1- to 2-cm tumor (60%), and left breast cancer (80%); and had a lumpectomy (70%). Global activity retention increased from the beginning of radiation to 6 mo postradiation (65%, 60%, 82%, 87%). Instrumental or social were 75% of the important activities.

At the end of radiation, a woman who had the lowest proportion of activities retained compared with a woman with the greatest had more comorbidities, took more medications, experienced more side effects and less social support, described participating in activities primarily at the cancer center, and used fewer strategies to improve function. At 6 mo postradiation, a woman who had the lowest proportion of activities retained compared with a woman with the greatest had a more advanced cancer, described participating in activities in fewer environments, worked >40 hr/wk, cared for a disabled son, and complained of more fatigue.

DISCUSSION: Survivors in this study retained fewer activities if they participated in activities within a limited number of environments and worked >40 hr/wk (extrinsic) and had advanced cancer and more comorbidities, received additional treatments for other medical conditions, and experienced more fatigue (intrinsic).

IMPACT STATEMENT: This study illustrates the connection among the survivors’ experiences participating in important activities, their environment, and their occupational performance; application of the Person–Environment–Occupation–Performance Model; and importance of resuming instrumental and social activities during and after cancer treatment.