“Cautiously Optimistic That Today Will Be Another Day With My Disease Under Control”

Burles, Meridith; Holtslander, Lorraine

doi:10.1097/ncc.0b013e318277b57e

Cited by 20 publications

(11 citation statements)

References 18 publications

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“…Navigating uncertainty through a range of unsettling experiences across the diagnosis phase was common for participants. Findings concur with past research that an ovarian cancer diagnosis is a major source of distress and uncertainty, involving heightened concern and anxiety, shock at diagnosis, and the perception that ovarian cancer is a death sentence . The experience of uncertainty and associated emotional trajectory, during the diagnosis phase, provides an important context for participants' perception of health care experiences.…”

Section: Discussionsupporting

confidence: 81%

Experiences and health care preferences of women with ovarian cancer during the diagnosis phase

et al. 2019

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Objective: An ovarian cancer diagnosis presents physical and psychological challenges. Usually identified at an advanced stage, the disease involves invasive treatment and has a high mortality rate. The diagnosis phase is generally a time of heightened distress. Accordingly, the aim of this qualitative study was to explore the health care experiences and preferences of women with ovarian cancer during this phase, and identify opportunities to enhance women's experiences and outcomes.Methods: Thirty-four women diagnosed with ovarian cancer were recruited from across Australia (median age = 60.5 years, range = 31-74 years). Semistructured interviews explored participants' experience of health care services and preferences during the diagnosis phase. Thematic analysis of interview transcripts followed.Results: Five themes were identified including "navigating uncertainty" which summarized women's general experiences throughout the diagnosis phase and provided a context for concomitant health care preferences. Four other themes highlighted significant areas where health care may be better aligned with women's preferences.These included "responsiveness in health care," "relational communication," "personcentered information," and "preparation for living beyond cancer treatment."Conclusions: Responsive and prompt health care services that employ relational communication, provide patient-centered information, and prepare women for survivorship could improve the health care experiences of women diagnosed with ovarian cancer.

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Section: Discussionsupporting

confidence: 81%

Experiences and health care preferences of women with ovarian cancer during the diagnosis phase

et al. 2019

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“…Living with and beyond cancer is an experience that disrupts implicit assumptions about life and forces people to reconstruct their perspectives on self and future . The disruption of living with and beyond cancer has been associated with both “relinquishing control” and “taking charge,” and while living with and beyond cancer is associated with loss and altered life, included studies also report positive changed attitudes and views of life after a cancer diagnosis .…”

Section: Resultsmentioning

confidence: 99%

Conceptual framework for living with and beyond cancer: A systematic review and narrative synthesis

et al. 2019

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Objective The concept of living with and beyond cancer is now emerging in policy and literature. Rather than viewing this notion simply as a linear timeline, developing an agreed understanding of the lived experience of people affected by cancer will aid the development of person‐centred models of care. Methods A systematic review was conducted. The review question was “What does the term ‘living with and beyond cancer’ mean to people affected by cancer?” The protocol for the review was preregistered in the PROSPERO database (PROSPERO CRD42017059860). All included studies were qualitative, so narrative synthesis was used to integrate descriptions and definitions of living with and beyond cancer into an empirically based conceptual framework. Results Out of 2345 papers that were identified and 180 that were reviewed, a total of 73 papers were included. The synthesis yielded three interlinked themes: Adversity (realising cancer), Restoration (readjusting life with cancer), and Compatibility (reconciling cancer), resulting in the ARC framework. Conclusions Three themes describe the experience of living with and beyond cancer: adversity, restoration, and compatibility. The ARC framework provides an empirically informed grounding for future research and practice in supportive cancer care for this population.

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“…Although there have been other small qualitative studies that have provided important narratives of the experiences of women living with ovarian cancer [17][18][19][20][21][22][23], to the best of our knowledge, ours is the first interview study to offer both qualitative information and quantitative summaries that assess disease-related and treatment-attributed symptoms and the degree of bother and other impacts of these symptoms on the lives of women with ovarian cancer. The mean time between first diagnosis of ovarian cancer and the qualitative interviews in the current study (4 years and 2 years in Europe and USA, respectively) will have aided the broad collection of patient experiences during the disease and treatment trajectory.…”

Section: Discussionmentioning

confidence: 99%

“Lower abdominal pains, as if I was being squeezed…in a clamp”: A Qualitative Analysis of Symptoms, Patient-Perceived Side Effects and Impacts of Ovarian Cancer

Martin¹,

Halling

Eek

et al. 2019

Patient

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Background Understanding the patient's perception of their disease is vital for guiding care decisions. The current study aimed to identify the most predominant experiences in women diagnosed with, and treated for, ovarian cancer in terms of disease-related symptoms, treatment-attributed side effects and their impacts. Methods Semi-structured qualitative interviews about disease-related symptoms, treatment-attributed side effects and their impacts were conducted with women who were being treated for ovarian cancer in Europe (n = 55) or in the USA (n = 9). The women were also asked to rate the bothersomeness of the symptoms, side effects and impacts that they mentioned during the interview. Symptoms, side effects and impacts were identified from coded interview transcripts using an iterative coding framework. Results Bloating, abdominal pain, tiredness and frequent urination were the most frequently expressed symptoms, and were reported by 72%, 67%, 64% and 55% of women, respectively, which together constituted approximately 30% of all symptom expressions. The most bothersome symptoms were reported as bloating, abdominal pain, pain in the side, tiredness and fatigue. The most frequently expressed side effects were hair loss, neuropathy, tiredness and nausea, which were reported by 84%, 63%, 61% and 61% of women, respectively. The most bothersome reported side effects were constipation, nausea, diarrhoea, pain in general, fatigue, weakness, reduced sleep quality and hair loss. Feelings of anxiety, concerns about the future, physical functioning, work limitations and the adoption of coping strategies were the most frequently expressed impacts and were reported by 72-80% of women. Impacts reported as the most difficult to deal with were concerns about the future, emotional difficulties in general, physical functioning, sexual functioning, negative self-image, fatigue, sleep difficulties, financial burden and work limitations. Conclusions In our qualitative study, the most common and most bothersome experiences reported by women treated for ovarian cancer were symptoms of bloating, abdominal pain and tiredness; side effects of hair loss, nausea and tiredness/ fatigue; and impacts relating to concerns about the future, physical functioning and work limitations. We suggest that clinicians measure these experiences consistently and take them into consideration when making treatment decisions.

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“Cautiously Optimistic That Today Will Be Another Day With My Disease Under Control”

Cited by 20 publications

References 18 publications

Experiences and health care preferences of women with ovarian cancer during the diagnosis phase

Experiences and health care preferences of women with ovarian cancer during the diagnosis phase

Conceptual framework for living with and beyond cancer: A systematic review and narrative synthesis

“Lower abdominal pains, as if I was being squeezed…in a clamp”: A Qualitative Analysis of Symptoms, Patient-Perceived Side Effects and Impacts of Ovarian Cancer

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