Abstract
Researchers introduce a unique finding, a cultural shift, that occurs during cancer survivorship. This shift includes “funneling effects, ” such as changes in client factors, changes in perspective, and the experience of distress, all of which influence occupational engagement. Specifically, occupations were either lost, gained, or modified. Understanding the impact a cultural shift has on occupational engagement during survivorship underpins OT’s ability to build client-centered interventions.
Primary Author and Speaker: Katie Polo
Additional Authors and Speakers: Amy Ragle, Gabrielle Ingram, Nicole Scholl, Tamzyn Mather, Taylor Welch
As advances in medicine and research positively influence life expectancy and remission rates, the population of individuals living with a cancer diagnosis is growing larger each year. However, survivors continue to experience complications that can last months to years following diagnosis and treatment which impact their daily lives. In order to provide evidence-based care in this emerging practice area, OTs must understand the various effects survivorship can have on daily life through the voice of those we serve. The purpose of this study was to explore the lived experiences of adult community cancer survivors related to daily activities and occupational performance.
Researchers utilized a qualitative study design and a participatory-action research method, Photovoice, to blend photos and words from focus groups to allow individuals an opportunity to express needs, desires, and problems experienced during survivorship. English speaking adults, (18 +), with a present or past diagnosis of cancer, the ability to provide consent and utilize a camera were recruited from a community cancer survivorship center. A demographic survey was administered and focus groups were conducted. Participants discussed their survivorship journey and shared photographs during focus groups as a means of expressing and reflecting upon their experiences. The SHOWED method (Wang, 1999) was utilized to frame descriptions and refection on participant photos during the focus groups. A constant comparative analysis approach and cross-photo comparison was utilized until conceptual saturation was achieved (Corbin & Strauss, 2015).
Thirteen survivors participated. One overarching theme emerged, a “cultural survivorship shift” where survivors described becoming a member of a new culture that defines their survivorship journey. This shift can be depicted as a “funnel effect” where diagnosis leads to the experience of distress, changes in perspective, and changes in client factors, all of which can influence occupational performance. A lack of education regarding cancer survivorship, the financial burden of a chronic condition, and role strain within various relationships were all factors that characterized participants’ distress. The experience of a cancer diagnosis impacted individual perspectives where participants became more aware of their mortality and began to appreciate life more. Client factor changes discussed by participants included energy levels, psychosocial factors, sensation, and cognition. As a result of the changes that occurred in the cultural shift, participants experienced gains, losses, and modifications of occupations. Changes in client factors often caused a loss in occupational engagement due to the impact on motivation and the ability to perform an occupation. Modifications in occupational performance occurred when participants felt that occupations were too demanding. The demands often caused participants to seek assistance from external support or reduce engagement in meaningful activities because they were unable to balance their participation with the demands of the task.
Researchers of this study took a unique, holistic view on the topic of the lived experiences of cancer survivors, and have identified unique themes suggesting a culture shift at the time of diagnosis and a funnel effect that ultimately create various changes in occupational performance. Newman et al. (2019), identified the construct of participation involves a deeper understanding of various factors including individual and cultural expectations, that have been identified in this study, in order to determine participation levels or restrictions and ultimately inform occupational therapy practice.
Wang, C., & Burris, M. A. (1997). Photovoice: Concept, methodology, and use for participatory needs assessment. Health Education & Behavior, 24(3), 369-387.
Corbin, J., & Strauss, A. L. (2015). Basics of qualitative research. Thousands Oak, CA: SAGE Publications, Inc.
Newman, R. M., Alfano, C. M., Radomski, M. V., Pergolotti, M., Wolf, T. J., Sleight, A. G., … Lyons, K. D. (2019). Catalyzing Research to Optimize Cancer Survivors’ Participation in Work and Life Roles. OTJR: Occupation, Participation and Health, 1-8. https://doi.org/10.1177/1539449219844749