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Women's experiences of gynecological cancer and interaction with the health care system through different phases of the disease
Örebro University, School of Health and Medical Sciences.
2009 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

This thesis explores women’s experiences of being diagnosed with gynecological cancer, during different phases of the disease trajectory. The women were undergoing treatment for primary gynecological cancer (study I) and for recurring ovarian cancer (studies II–IV). The focus of studies I and III was the women’s interactions with the health care system, while the experience of recurring ovarian cancer was sought in studies II and IV. Interviews were made and the text was tape-recorded and transcribed. The women in studies I-III were interviewed at the end of their treatment periods.

The method used in studies I and III was subjected to qualitative content analysis.

The aim of study I was to illuminate what women, diagnosed with primary gynecological cancer, reported to be important in their interactions with the health care system. Fourteen women were interviewed. The results were described in three categories: optimal care, good communication, and maintained self-image and sexuality.

The aim in study III was to explore what women with the first recurrence of ovarian cancer perceived as important in their interactions with the health care team. Twelve women were interviewed. The main finding was that the women needed help from the health care team to familiarize themselves with the disease. This theme was supported by the following sub-themes: being confirmed as a person, getting help in making sense of the information about the disease and its treatment, having the opportunity to be involved and to share responsibility, and feeling confident that medical expertise is good enough.

A phenomenological method was used in studies II and IV. The aim of study II was to deepen the understanding of women’s experiences of the first recurrence of ovarian cancer. Twelve women were interviewed. The findings showed three key constituents: being denied one’s future while simultaneously hoping to be able to delay the cancer’s advancement; feeling alienated from both oneself and one’s surroundings; and being responsible. The key constituents was integrated into a structure: living in limbo, characteristic of an existential loneliness.

In study IV, four of the women from studies II–III were interviewed twice, three and five years after the first recurrence. The aim was to illuminate the phenomenon of living with life-prolonging treatment of recurring ovarian cancer. The analysis started with creation of the situated structure for each woman. The situated structures were transformed into a general structure of living with life-prolonging treatment of recurring ovarian cancer that was formulated as follows: time was experienced as short, yet extendable; the body became increasingly fragile; strength proved itself to be unpredictable; and the wish to share the meaning of the disease with others was experienced as unattainable.

The findings produced important knowledge that increases the understanding of the needs of women living with gynecological cancer. This knowledge provides a basis to shape health care delivery in accordance with the needs of the women.

 

Place, publisher, year, edition, pages
Örebro: Örebro universitet , 2009. , 68 p.
Series
Örebro Studies in Medicine, ISSN 1652-4063 ; 37
Keyword [en]
Women`s perspective, gynecological cancer, recurring ovarian cancer, professional-patient relations.
National Category
Surgery Nursing
Research subject
Surgery
Identifiers
URN: urn:nbn:se:oru:diva-8588ISBN: 978-91-7668-701-7 (print)OAI: oai:DiVA.org:oru-8588DiVA: diva2:277147
Public defence
2009-12-10, Wilandersalen, M-huset, Universitetssjukhuset, 701 85 Örebro, 13:00 (Swedish)
Opponent
Supervisors
Available from: 2009-11-16 Created: 2009-11-16 Last updated: 2011-05-02Bibliographically approved
List of papers
1. Important aspects of health care for women with gynecologic cancer
Open this publication in new window or tab >>Important aspects of health care for women with gynecologic cancer
2003 (English)In: Oncology Nursing Forum, ISSN 0190-535X, Vol. 30, no 2, 313-319 p.Article in journal (Refereed) Published
Abstract [en]

Purpose/Objectives: To describe what women diagnosed with primary gynecologic cancer reported to be important during their interacion with the healthcare system.

Design: Qualitative.

Setting: A specialized gynecologic cancer care unit in central Sweden.

Sample: 14 women diagnosed with primary gynecologic cancer were recruited. The women had been referred to the specialized care unit for radiation or cytostatic therapy.

Methods: Tape-recorded interviews were transcnbed, coded, categoized, and analyzed.

Main Research Variables: Primary diagnosed women with cancer and their experience with quality of care during diagnosis and treatment.

Findings: Three partly overlapping categories (i.e., optima! care,good communication, and self-image and sexuality) were found to be of central importance in quality of health care. Participants stated that health care should be based on their own perceptions of the need for information and dialogue and how the disease and treatment would affect their health, self-image, and sexuality. Everyday conversations also were very important.

Conclusions: Central importance in health care for the women included both rational and human aspects. The primary need of participants was available, competent, and coordinated.

Implications for Nursing: Women with gynecologic cancer should be given individualized information and care to satisfy their individual needs and reinforce their self-image. Nurses have an important role in strengthening women´s  feelings of hope and supporting them in maintaining as positive a self-image as possible. Information and everyday conversation are of great significance. Sexuality should be an integral part of holistic care; to this end, inclusion of each woman's sexual partner may be helpful when discussions concerning sexuality occur.

Place, publisher, year, edition, pages
Pittsburg: Oncology Nursing Society, 2003
National Category
Nursing Social Sciences Interdisciplinary Surgery
Research subject
Surgery
Identifiers
urn:nbn:se:oru:diva-8575 (URN)10.1188/03.ONF.313-319 (DOI)
Available from: 2009-11-16 Created: 2009-11-13 Last updated: 2016-12-12Bibliographically approved
2. Recurrence of ovarian cancer: living in limbo
Open this publication in new window or tab >>Recurrence of ovarian cancer: living in limbo
2007 (English)In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 30, no 4, 270-277 p.Article in journal (Refereed) Published
Abstract [en]

Few studies have shed light on women's life situation after being informed of having recurrent ovanan cancer, The present study aimed to elucidate women's experiences of living with this knowledge. interviews were conducted with 12 women who were undergoing or had just completed chemotherapy, 5 to 10 months after learning or the recurrence. Data were collected and analyzed based on a life world perspective using a descriptive phenomenoiogical method. The women's experiences are described via 3 key constituents: being denied one's future while simultaneously hoping to be ble to delay the cancer's advancement, feeling alienated from both oneself and one's surroundings, and being responsible. The key constituents were integrated into the structure "living in limbo." The women lived on the threshoid to the unknown. They were preparing themselves both for a continued life and for death. "Living in limbo" can be described as a phase of a health-illness transition characterized by loneliness. The vulnerable position and existential struggle of these women should be focused upon in nursing. The sensitive dialogue is essential in these cases.

Place, publisher, year, edition, pages
Philadelphia: Lippincott Williams & Wilkins, 2007
Keyword
Loneliness and alienation, Phenomenology, Recurrent ovarian cancer, Responsibility, Women´s perspective
National Category
Nursing Social Sciences Interdisciplinary Medical and Health Sciences
Research subject
Surgery; Cancer Epidemiology
Identifiers
urn:nbn:se:oru:diva-8577 (URN)10.1097/01.NCC.0000281729.10362.3a (DOI)
Note
Part of a thesis: http://urn.kb.se/resolve?urn=urn:nbn:se:oru:diva-8588Available from: 2009-11-16 Created: 2009-11-13 Last updated: 2016-12-12Bibliographically approved
3. Women's perceptions of interactions with the health care team during treatment of the first recurrence of ovarian cancer
Open this publication in new window or tab >>Women's perceptions of interactions with the health care team during treatment of the first recurrence of ovarian cancer
(English)Manuscript (preprint) (Other academic)
Abstract [en]

Most women suffering a recurrence of ovarian cancer return to the same department where their primary cancer was treated. The aim of this study was to explore what women with the first recurrence of ovarian cancer perceived as important in their interaction with the healthcare team. Interviews were conducted with 12 women at the end of a chemotherapy treatment. The interviews were subjected to qualitative content analysis. The findings stress the importance for the healthcare team to offer each woman the opportunity to obtain support to become familiar with the disease. This theme of becoming familiar with the disease was supported by the following sub-themes: being confirmed as a person, getting help in making sense of information regarding the disease and its treatment, having the opportunity to be involved and share responsibility, and feeling confident that medical expertise is good enough.

Becoming familiar with the disease was expressed as a process of understanding and assimilating the whole new situation. Optimal support from healthcare professionals was facilitated by establishing trusting relationships. Being confirmed and treated as a unique person was seen as a prerequisite to achieving familiarity with the disease. The women needed help to make sense of the information available. They stressed the importance of being able to influence their encounters with healthcare professionals in accordance with their own perspectives. Also of importance was having the opportunity to share the responsibility for their care and lives. The findings suggest that patients’ need should be identified repeatedly throughout the illness trajectory.

Keyword
Ovarian neoplasms, recurrence, professional patient relations
National Category
Nursing Surgery
Research subject
Surgery
Identifiers
urn:nbn:se:oru:diva-8578 (URN)
Available from: 2009-11-16 Created: 2009-11-13 Last updated: 2016-12-12Bibliographically approved
4. The lived experience of life-prolonging treatment of recurring ovarian cancer
Open this publication in new window or tab >>The lived experience of life-prolonging treatment of recurring ovarian cancer
(English)Manuscript (preprint) (Other academic)
Abstract [en]

There has been an improvement in the effectiveness of chemotherapy agents to restrain recurring ovarian cancer, such that women live with the disease for longer than they used to. However, there is a knowledge gap concerning how patients define their world from a lifeworld perspective, when living with life-prolonging treatment. The aim of the study was to illuminate the phenomenon of living with life-prolonging treatment of recurring ovarian cancer. Four women were interviewed twice, once in 2003, three years after the first recurrence, and again in 2005. The method was based on Giorgi’s phenomenological method. A situated structure for each woman was followed by a transformation into a general structure for all women, which communicates the most invariant meaning of the phenomenon.

The general structure showed the growing threat to the women’s existence and their perception that time was short, yet extendable. Awareness of life’s limitedness evoked gratitude for the possibility to postpone death. The body’s strength was increasingly fragile and jeopardized the restraining of the disease. The amount of strength available was unpredictable, which meant a break in the rhythm of everyday life. Strength had to be captured and cared for.

The wish to share the meaning of the disease with others was expressed as unattainable. The women were unable to realize the desire to be seen as an example of someone living with ongoing treatments. In encounters with other people, the cancer-afflicted body stood out as a barrier to communication. Inability to share their experience was also manifested in the women’s encounters with caregivers, which were characterized by an objective attitude. The women met with a gradual compliance their caregivers’ inability to respond to them.

National Category
Nursing Social Sciences Interdisciplinary
Research subject
Surgery
Identifiers
urn:nbn:se:oru:diva-8580 (URN)
Available from: 2009-11-16 Created: 2009-11-13 Last updated: 2016-12-12Bibliographically approved

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