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

Catherine Scott Finlayson, Mei Fu, Allison Squires, Allison Applebaum, Janet Van Cleave, Roisin O'Cearbhaill, Antonio P. DeRosa

Research output: Contribution to journalArticle

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.

Original languageEnglish (US)
Pages (from-to)377-384
Number of pages8
JournalJournal of palliative medicine
Volume22
Issue number4
DOIs
StatePublished - Apr 1 2019

Fingerprint

Women's Rights
Ovarian Neoplasms
Decision Making
Interviews
Therapeutics
Chronic Disease

Keywords

  • awareness
  • disease status
  • ovarian cancer
  • phenomenology
  • qualitative

ASJC Scopus subject areas

  • Nursing(all)
  • Anesthesiology and Pain Medicine

Cite this

The Experience of Being Aware of Disease Status in Women with Recurrent Ovarian Cancer : A Phenomenological Study. / Finlayson, Catherine Scott; Fu, Mei; Squires, Allison; Applebaum, Allison; Van Cleave, Janet; O'Cearbhaill, Roisin; DeRosa, Antonio P.

In: Journal of palliative medicine, Vol. 22, No. 4, 01.04.2019, p. 377-384.

Research output: Contribution to journalArticle

Finlayson, Catherine Scott ; Fu, Mei ; Squires, Allison ; Applebaum, Allison ; Van Cleave, Janet ; O'Cearbhaill, Roisin ; DeRosa, Antonio P. / The Experience of Being Aware of Disease Status in Women with Recurrent Ovarian Cancer : A Phenomenological Study. In: Journal of palliative medicine. 2019 ; Vol. 22, No. 4. pp. 377-384.
@article{f498cfe8112842d788524f4fc248ffa0,
title = "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.",
keywords = "awareness, disease status, ovarian cancer, phenomenology, qualitative",
author = "Finlayson, {Catherine Scott} and Mei Fu and Allison Squires and Allison Applebaum and {Van Cleave}, Janet and Roisin O'Cearbhaill and DeRosa, {Antonio P.}",
year = "2019",
month = "4",
day = "1",
doi = "10.1089/jpm.2018.0127",
language = "English (US)",
volume = "22",
pages = "377--384",
journal = "Journal of Palliative Medicine",
issn = "1096-6218",
publisher = "Mary Ann Liebert Inc.",
number = "4",

}

TY - JOUR

T1 - The Experience of Being Aware of Disease Status in Women with Recurrent Ovarian Cancer

T2 - A Phenomenological Study

AU - Finlayson, Catherine Scott

AU - Fu, Mei

AU - Squires, Allison

AU - Applebaum, Allison

AU - Van Cleave, Janet

AU - O'Cearbhaill, Roisin

AU - DeRosa, Antonio P.

PY - 2019/4/1

Y1 - 2019/4/1

N2 - 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.

AB - 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.

KW - awareness

KW - disease status

KW - ovarian cancer

KW - phenomenology

KW - qualitative

UR - http://www.scopus.com/inward/record.url?scp=85064195543&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=85064195543&partnerID=8YFLogxK

U2 - 10.1089/jpm.2018.0127

DO - 10.1089/jpm.2018.0127

M3 - Article

VL - 22

SP - 377

EP - 384

JO - Journal of Palliative Medicine

JF - Journal of Palliative Medicine

SN - 1096-6218

IS - 4

ER -