The Experience of Being Aware of Disease Status in Women with Recurrent Ovarian Cancer: A Phenomenological Study

Abstract

Background: Awareness of disease status has been identified as a factor in the treatment decision-making process. Women with recurrent ovarian cancer are facing the challenge of making treatment decisions throughout the disease trajectory. It is not understood how women with ovarian cancer perceive their disease and subsequently make treatment decisions. Purpose: The purpose of this phenomenological study was to understand the lived experience of women with recurrent ovarian cancer, how they understood their disease and made their treatment decisions. Methods: A qualitative design with a descriptive phenomenological method was used to conduct 2 in-depth interviews with 12 women (n = 24 interviews). Each interview was *60 minutes and was digitally recorded and professionally transcribed. Data collection focused on patients' understanding of their disease and how patients participated in treatment decisions. A modified version of Colaizzi's method of phenomenological reduction guided data analysis. Results: Three themes emerged 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. Conclusions and Implications: This study revealed how 12 women conceptualized recurrent ovarian cancer as a chronic disease and their perceived inability to make treatment decisions because of lack of information and professional qualifications, resulting in enduring emotional distress. 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 awareness of disease status and decision-making processes of patients.

Suffering experiences of people with cancer undergoing chemotherapy: A meta‐ethnographic study

“…Loss of hope was manifested in the following ways: perceiving one's death as an imminent event; experiencing helplessness when dealing with death; being aware of the incurable nature of the condition and that all efforts to fight cancer would be useless; always expecting the worst; accepting that it was their destiny; giving up on making plans; abandoning themselves; feeling frustrated about the lack of response of some symptoms to conventional treatment; feeling despondent because of the perception that they were just “surviving”; and feeling like speeding up their death (Bergqvist & Strang, 2017; Beusterien et al, 2013; Boucher et al, 2018; Buiting et al, 2013; Chen et al, 2016; Cheung et al, 2012; Chircop & Scerri, 2018a, 2018b; de Kruif et al, 2020; Finlayson et al, 2019; Ghodraty‐Jabloo et al, 2016; Iddrisu et al, 2020; Kakuta et al, 2015; Maree & Mulonda, 2015; Martin et al, 2020; Mendonça, Pereira, Magnago, Silva, et al, 2020a; Nies et al, 2018; Nissim et al, 2013; Palacios‐Espinosa & Zani, 2014; Stanze et al, 2019; Wakiuchi et al, 2019b).…”

“…Likewise, different coping strategies were sought, acting to both to inspire hope and to strengthen resilience during the course of chemotherapy. To keep hope alive, patients deployed a number of strategies: turning to more realistic and short‐term goals, because they did not know how long they were going to live; valuing meaningful relationships that made them feel part of something bigger; experiencing gratitude for the relief of physical symptoms and the reestablishment of their functional capacities; focusing on the expectation of health recovery when the treatment was concluded; revering each day as an opportunity to enjoy little things; remembering important moments that could be missed; pointing out qualities and potentialities they ignored; describing how their faith and spiritual practices were important to transcend suffering; focusing on the possibility of keeping the disease stable; and hoping for new therapeutic regimens that could offer them a longer life (Albrecht et al, 2019; Bergqvist & Strang, 2017; Boucher et al, 2018; Chen et al, 2016; Chircop & Scerri, 2017; de Kruif et al, 2020; Ekenberg et al, 2019; Finlayson et al, 2019; Ghodraty‐Jabloo et al, 2016; Gómez et al, 2011; Guerrero et al, 2011; Kakuta et al, 2015; Liao et al, 2018; Maree & Mulonda, 2015; Nies et al, 2018; Ríos‐Quezada & Cruzat‐Mandich, 2015; Seibaek et al, 2013; Soares et al, 2019; Stanze et al, 2019; Thornton et al, 2014; Wakiuchi et al, 2019a, 2019b).…”

“…Whether or not suffering had a known cause, expectations of a fruitful future were overshadowed by fear of not achieving what was dreamed of, not becoming what they aspired to be, or becoming someone they did not expect to be. Doubts about whether events were positive or negative emerged from uncertainty regarding the efficacy of medications; results of tomography scans; lack of knowledge of when and how the symptoms of the disease progression would occur; expectation of pain and suffering; perceived incapacity to make plans; and questions in the face of the discovery of new treatments (Bergqvist & Strang, 2017; Boucher et al, 2018; Chen et al, 2016; Chircop & Scerri, 2017; Finlayson et al, 2019; Liao et al, 2018; Nies et al, 2018; Villarreal‐Garza et al, 2019).…”

“…Fear and insecurity assumed such a devastating character that they were defined as suffering itself . Focusing on the present, trying to keep their precancer life, and avoiding intrusive thoughts stood out among the most‐used strategies to reduce despair (Bergqvist & Strang, 2017; Boucher et al, 2018; Ekenberg et al, 2019; Finlayson et al, 2019; Ghodraty‐Jabloo et al, 2016; Martinez Tyson et al, 2016; Nies et al, 2018; Stanze et al, 2019).…”

“…Supported the third‐order construct: Chircop & Scerri, 2018a; Stanze et al, 2019; Wakiuchi et al, 2019b; Noorisanchooli et al, 2018; Komatsu et al, 2019; Chen et al, 2016; Suwankhong & Liamputtong, 2018; de Kruif et al, 2020; Nizamli et al, 2011; Chircop & Scerri, 2018b; Martinez Tyson et al, 2016; Mesquita et al, 2011; Gómez et al, 2011; Albrecht et al, 2019; Bergqvist & Strang, 2017; Nissim et al, 2013; Nies et al, 2018; Kanda et al, 2017; Guerrero et al, 2011; Beusterien et al, 2013; Ekenberg et al, 2019; Buetto & Zago, 2015; Palacios‐Espinosa & Zani, 2014; Soares et al, 2019; Buiting et al, 2013; Chou & Lu, 2019; Medeiros et al, 2019; Boucher et al, 2018; Cebeci et al, 2012; Seibaek et al, 2013; Ríos‐Quezada & Cruzat‐Mandich, 2015; Martin et al, 2020; Maree & Mulonda, 2015; Lourens, 2013; Liao et al, 2018; Iddrisu et al, 2020; Cheung et al, 2012; Kakuta et al, 2015; Ghodraty‐Jabloo et al, 2016; Finlayson et al, 2019; Chircop & Scerri, 2017; Abdel‐Ghany et al, 2019; Wakiuchi et al, 2019a; Villarreal‐Garza et al, 2019; Mendonça, Pereira, Magnago, Silva, et al, 2020a.…”