The experience of being aware of disease status in women with recurrent ovarian cancer: A phenomenological study
Catherine Scott Finlayson, PhD, RN, OCN
- Sigma Affiliation
- Omega Delta
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Background: In the United States, each year about 22,440 women are diagnosed with ovarian cancer, the deadliest gynecological cancer - with an estimated 14,080 deaths each year. Patients with recurrent ovarian cancer have more options today due to advances in treatments, and specifically, with the advent of immunotherapies. Many have to make many treatment decisions throughout the disease trajectory and awareness of disease status is one of the factors of the treatment decision making process in the ovarian cancer population. To date the literature has generally conceptualized and operationalized awareness of disease status in cancer patients from the health care provider’s perspective. It is not well understood, however, as to how women with ovarian cancer perceive their disease and their process of treatment decision-making.
Purpose: The purpose of this phenomenological study was to understand the lived experience of women with recurrent ovarian cancer and how they understood their disease and made their treatment decisions.
Methods: Two in-depth interviews were conducted with 12 women over a 15 month period, with the digitally recorded interiews lasting approximately 60 minutes. Each participant had recurrent ovarian cancer and had received multiple chemotherapy treatments. Interviews focused on patients’ understanding of their disease, factors that impacted their understanding, how patients participated in treatment decisions as well as the impact of being diagnosed with, and in treatment for, recurrent ovarian cancer. After professional transcription of the recordings, Colaizzi’s method of phenomenological reduction guided the data analysis.
Results: Three themes were intuited to describe the phenomenon of being aware of disease status: 1) Perceiving recurrent ovarian cancer as a chronic illness; 2) Perceived inability to make treatment decisions; and, 3) Enduring emotional distress. Each of these twelve women haddifferent personal journeys of being diagnosed with and treated for recurrent ovarian cancer. Yet there were shared essential experiences of how they understood their disease status, the process of making treatment decisions and the emotional distress of managing recurrent ovarian cancer. Within the context that more treatments were available for managing recurrent ovarian cancer, participants did not associate their disease with imminent death and instead they viewed their disease as a chronic illness and focused on “stabilizing” their disease with available treatments.
Conclusions and Implications: The findings of this study revealed how twelve women, with recurrent ovarian cancer, experienced being aware of their disease status. The participants conceptualized recurrent ovarian cancer as a chronic disease in the context of having more treatment options available to them. They perceived an inability to make treatment decisions due to lack of information and professional qualifications, which resulted in enduring emotional distress. These results provided insight into how patients with recurrent ovarian cancer understand their disease. In addition, it highlights the difficulty patients may have making treatment decisions. Future research should replicate the study to confirm the persistence of the themes for racially, ethnically, and religiously diverse patient samples and to improve understanding of the role of care contexts in shaping awareness of disease status and decision making processes of patients. Current findings may also be useful for informing intervention design.
This dissertation has also been disseminated through the ProQuest Dissertations and Theses database. Dissertation/thesis number: 10743714; ProQuest document ID: 2031075089. The author still retains copyright.
This item has not gone through this repository's peer-review process, but has been accepted by the indicated university or college in partial fulfillment of the requirements for the specified degree.
|Review Type||None: Degree-based Submission|
|Research Approach||Qualitative Research|
|Keywords||Recurrent Ovarian Cancer;
Treatment Decision Making Process;
Quality of Life
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