Nova Southeastern University NSUWorks Occupational Terapy Program Student Teses, Department of Occupational Terapy Dissertations and Capstones 1-1-2015 Exploratory study of breast cancer survivors' lived experience : activity engagement during and afer breast cancer treatment Anne Fleischer Nova Southeastern University Tis document is a product of extensive research conducted at the Nova Southeastern University College of Health Care Sciences. For more information on research and degree programs at the NSU College of Health Care Sciences, please click here. Follow this and additional works at: htp://nsuworks.nova.edu/hpd_ot_student_dissertations Part of the Occupational Terapy Commons Share Feedback About Tis Item NSUWorks Citation Anne Fleischer. 2015. Exploratory study of breast cancer survivors' lived experience : activity engagement during and afer breast cancer treatment. Doctoral dissertation. Nova Southeastern University. Retrieved from NSUWorks, College of Health Care Sciences – Occupational Terapy Department. (34) htp://nsuworks.nova.edu/hpd_ot_student_dissertations/34. Tis Dissertation is brought to you by the Department of Occupational Terapy at NSUWorks. It has been accepted for inclusion in Occupational Terapy Program Student Teses, Dissertations and Capstones by an authorized administrator of NSUWorks. For more information, please contact EXPLORATORY STUDY OF BREAST CANCER SURVIVORS’ LIVED EXPERIENCE: ACTIVITY ENGAGEMENT DURING AND AFTER BREAST CANCER TREATMENT by Anne Fleischer Submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy in Occupational Therapy Occupational Therapy Department College of Allied Health and Nursing Nova Southeastern University Fort Lauderdale, Florida 33328 May 2015 NOVA SOUTHEASTERN UNIVERSITY HEALTH PROFESSIONS DIVISION COLLEGE OF ALLIED HEALTH AND NURSING OCCUPATIONAL THERAPY DEPARTMENT FORT LAUDERDALE, FL 33328 This dissertation, written by Anne Fleischer under direction of her Dissertation Committee, and approved by all of its members, has been presented and accepted in partial fulfillment of requirements for the degree of DOCTOR OF PHILOSOPHY DISSERTATION COMMITTEE _____________________________________________ ________________ Max A. Ito, Ph.D., OTR/L Date Chairperson of Dissertation Committee _____________________________________________ ________________ Adrienne Lauer, Ed.D, OTR/L Date Dissertation Committee Member _____________________________________________ ________________ Robin Cooper, Ph.D. Date Dissertation Committee Member NOVA SOUTHEASTERN UNIVERSITY HEALTH PROFESSIONS DIVISION COLLEGE OF ALLIED HEALTH AND NURSING OCCUPATIONAL THERAPY DEPARTMENT FORT LAUDERDALE, FL 33328 Dissertation Report Certification We hereby certify that this dissertation report, submitted by Anne Fleischer, conforms to acceptable standards and is fully adequate in scope and quality to fulfill the dissertation requirement for the Doctor of Philosophy degree. Approved: ______________________________________________ ________________ Kristin Winston, Ph.D., OTR/L Date Ph.D. OT Program Director ______________________________________________ ________________ Wendy Stav, PhD., OTR/L, SCDCM, FAOTA Date Chair, Occupational Therapy Department ______________________________________________ ________________ Peter L. Taylor, Ph.D. Date Associate Professor, Associate Dean of Academic Affairs, College of Health Care Sciences ______________________________________________ ________________ Stanley H. Wilson, PT, Ed.D., CEAS Date Dean, College of Health Care Sciences Abstract The aim of this study is to describe breast cancer survivors’ experiences and the associated meanings participating in their important activities during and after breast cancer treatment and the relationship among the survivor, environment, occupation, and performance, using a concurrent mixed method design. Ten survivors between the ages of 45 and 64 with Stage I, II, or III breast cancer who had been treated consecutively with surgery, chemotherapy, and radiation therapy were recruited for the study. Each survivor completed the Activity Card Sort-modified scoring system (ACSm) during the first and last week of radiation therapy and 3 and 6 months post radiation therapy. Additionally, each survivor participated in a semi-structured interview at the end of radiation therapy and 6 months afterwards. Qualitative data was analyzed using interpretative phenomenological analysis (IPA) to understand the survivors’ experiences participating in their most important activities. The means and standard deviations of the proportion of activities resumed for the participants’ global and category activities were calculated at each time point. A desire to resume participation in meaningful activities emerged from the data and demonstrated the interrelationship between environment, person, and occupation. Themes from the last week of radiation were (a) individual outlook influences how activities are approached, (b) social support reduces the stress of life, (c) side effects influence how activities are completed, and (d) personal and treatment stresses and struggles influenced their perspectives on life. At 6 months post radiation therapy, the themes were (a) emotional effect on activities, (b) life after cancer has changed due to cancer diagnosis and treatment, and (c) side effects continue to influence daily activities. Using the seven stages of analyzing mixed method data developed by Onwuegbuzie and Teddlie (2003), the qualitative and quantitative data were integrated. The results illustrated that the participants resumed a greater proportion of instrumental activities, which were reported consistently as one of their five most important activities. Additionally, supportive extrinsic factors appeared to be more influential in resuming participation important activities than intrinsic factors. Findings from this study support using the Person-Environment-Occupational-Performance (PEOP) model to develop treatment plans for women undergoing or recovering from breast cancer treatment. Acknowledgements Pursuing my doctorate has been a journey for my participants, my family, and me. When interviewing the 10 women for this study, I was not surprised by their struggles with their side effects. However, I was struck by the additional challenges these women were experiencing: deaths of children, terminal illnesses of siblings, teenage drug abuse, and teenage pregnancy. These stories of perseverance were inspiring and provided a clearer picture of the complexity of each person’s life. I am thankful for their willingness to share their very personal stories. Similar to the women in my study, I knew the process of pursuing my doctoral degree would include academic challenges and successes, but I did not anticipate family crises. During this journey, my son struggled with symptoms of bipolar disorder and a daughter sustained a mild head injury. Through these experiences and working on this dissertation, I have felt the power of love and support. My interest in oncology rehabilitation and this dissertation topic developed from my personal experiences with having breast cancer and the encouragement of a number of mentors: Kaye Leonard, PT; Susan Redmond, MBA, OTR/L; Kelly Lambeth, MPH, OTR/L; Susan Reaves, DPT; Dr. Gretchen Kimmick; Dr. Doris Brown; and Dr. Julia Lawrence. I am particularly grateful to Dr. Brown who recruited the participants for this study and supported me throughout this process. When I began this doctoral program, I entered with a quantitative background and was certain that my dissertation would be quantitative. After taking a number of classes with Dr. Robin Cooper, I became intrigued with qualitative methods, which led me to use a mixed method design for this study. I am very grateful for all the hours that she spent reviewing my analysis and providing the needed feedback. I would not have become as proficient of a qualitative researcher without her mentoring. Dr. Max Ito has been the quiet and steady force behind my dissertation. He has pushed me to improve my analytic and writing skills to a level that I did not think was possible. Dr. Adrienne Lauer’s sharp eye for detail has improved the quality of this dissertation. I would only have a bachelor’s degree in occupational therapy if it were not for my best friend and husband, Alan. He encouraged me to pursue my MPH at UNC- Chapel Hill and supported me as I pursued my doctorate at Nova Southeastern University. His undying love and encouragement made this possible for me. Lastly, I could not write this acknowledgement without mentioning my children. Their intermittent curious questions about my dissertation and the look of pride in their eyes when I completed writing my first draft of my dissertation were a joy for me. I hope my journey inspires them to pursue their dreams. Table of Contents Chapter 1: Introduction ........................................................................................................1 Background to the Problem ...........................................................................................1 Statement of the Problem ...............................................................................................6 Purpose of the Study ......................................................................................................6 Research Query ..............................................................................................................6 Definitions......................................................................................................................6 Rationale ........................................................................................................................8 Assumptions and Limitations ........................................................................................9 Chapter 2: Selected Review of the Literature ....................................................................13 Historic Overview ........................................................................................................13 Overview of the People-Environment-Occupational-Performance Model ..................14 Methodological Underpinnings ...................................................................................25 Interpretive Phenomenological Analysis .....................................................................29 IPA as a Phenomenological Method ............................................................................30 Summary ......................................................................................................................32 Chapter 3: Methodology ....................................................................................................34 Research Design and Methodology .............................................................................34 Subjects ........................................................................................................................37 Funding ........................................................................................................................41 Study Setting ................................................................................................................41 Measurement Tools ......................................................................................................41 Data Collection Procedures ..........................................................................................46 Data Analysis ...............................................................................................................47 Assumptions, Limitations, and Delimitations of Methods ..........................................52 Summary ......................................................................................................................54 Chapter 4: Results ..............................................................................................................55 Introduction to the Chapter ..........................................................................................55 Findings........................................................................................................................57 Summary of Results ...................................................................................................103 Chapter 5: Discussion ......................................................................................................107 Introduction to the Chapter ........................................................................................107 Discussion ..................................................................................................................109 Theoretical Model ......................................................................................................120 Implications for Practice ............................................................................................131 Implications for Future Research ...............................................................................136 Limitations and Delimitations ....................................................................................139 Summary ....................................................................................................................141 References ........................................................................................................................144 Appendices .......................................................................................................................164 Appendix A. Activity Card Sort-Modified Scoring System (ACSm) ......................164 Appendix B. Participant Profile ................................................................................168 Appendix C. Study Flyer ..........................................................................................170 Appendix D. Nova Southeastern University IRB Approval Letter ...........................171 Appendix E. Nova Southeastern University and Wake Forest Baptist Health Informed Consent Form .......................................................................................172 Appendix F. Wake Forest University IRB Approval E-mail ....................................178