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Evaluating the “Good Death” Concept from Iranian Bereaved Family

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O R I G I N A L R E S E A R C H<br />

Symptom Experience in Patients with<br />

Gynecological Cancers: The<br />

Development of Symptom Clusters<br />

through Patient Narratives<br />

Violeta Lopez, RN, PhD, Gina Copp, RN, PhD, Lisa Brunton, RN, MSN, and<br />

Alexander Molassiotis, RN, PhD<br />

Being diagnosed with gynecological cancer<br />

is associated with high distress levels, particularly<br />

in younger patients and in advanced<br />

disease. 1 The residual effects of surgery<br />

and various treatments are known to have a<br />

profound and long-lasting impact on quality-oflife<br />

issues with significant and potentially detrimental<br />

change to women’s self-esteem, mental<br />

health, sexual functioning, and fertility. 2 Although<br />

recent medical advances have increased<br />

survival rates, few investigations have been conducted<br />

to examine <strong>the</strong> interplay of physical and<br />

psychological symptoms on this group of patients.<br />

Moreover, previous studies have focused<br />

predominantly on ga<strong>the</strong>ring quantitative data<br />

such as <strong>the</strong> frequencies and types of symptoms,<br />

with little or no information about <strong>the</strong> gynecological<br />

cancer patients’ symptom experiences. 2,3<br />

This knowledge is important to gain if we are to<br />

understand <strong>the</strong> quality-of-life and supportive<br />

care issues that affect this group of patients.<br />

Thus, our current knowledge about gynecological<br />

cancer patients’ experiences <strong>from</strong> a qualitative<br />

perspective remains limited.<br />

From <strong>the</strong> Research Centre for Nursing and Midwifery Practice,<br />

Australian National University, Medical School, Canberra,<br />

Australia; School of Health and Social Sciences,<br />

Middlesex University, London; School of Nursing, Midwifery<br />

and Social Work, University of Manchester, Manchester,<br />

United Kingdom.<br />

Manuscript submitted February 22, 2010; accepted December<br />

13, 2011.<br />

Correspondence to: Violeta Lopez, TCH, RCNMP, Building<br />

6, Level 3, East Wing, Yamba Drive, Garran, 2605, Canberra,<br />

Australian Capital Territory (ACT), Australia; telephone:<br />

�612 6244 2333; fax: �612 6244 2573; e-mail: violeta.<br />

lopez@anu.edu.au; violeta.lopez@act.gov.au<br />

J Support Oncol 2011;9:64–71 © 2011 Published by Elsevier Inc.<br />

doi:10.1016/j.suponc.2011.01.005<br />

Abstract The vast majority of <strong>the</strong> increasing cancer literature on physical<br />

and psychological symptom clusters is quantitative, attempting<br />

ei<strong>the</strong>r to model clusters through statistical techniques or to test priori<br />

clusters for <strong>the</strong>ir strength of relationship. Narrative symptom clusters<br />

can be particularly sensitive outcomes that can generate conceptually<br />

meaningful hypo<strong>the</strong>ses for symptom cluster research. We conducted a<br />

study to explore <strong>the</strong> explanation of patients about <strong>the</strong> development<br />

and coexistence of symptoms and how patients attempted to selfmanage<br />

<strong>the</strong>m. We collected 12-month qualitative longitudinal data<br />

over four assessment points consisting of 39 interview data sets <strong>from</strong> 10<br />

participants with gynecological cancer. Participants’ experiences highlighted<br />

<strong>the</strong> presence of physical and psychological symptom clusters,<br />

complicating <strong>the</strong> patients’ symptom experience that often lasted 1 year.<br />

While some complementary and self-management approaches were<br />

used to manage symptoms, few options and interventions were discussed.<br />

The cancer care team may be able to develop strategies for a<br />

more thorough patient assessment of symptoms reported as <strong>the</strong> most<br />

bo<strong>the</strong>rsome and patient-centered sensitive interventions that encompass<br />

<strong>the</strong> physiological, psychological, sociocultural, and behavioral<br />

components of <strong>the</strong> symptom experience essential for effective symptom<br />

management.<br />

The physical effects on women after being<br />

diagnosed with gynecological cancer are often<br />

attributed not only to <strong>the</strong> symptoms arising<br />

<strong>from</strong> <strong>the</strong> disease itself but, most importantly,<br />

<strong>from</strong> <strong>the</strong> side effects of treatment such as surgery,<br />

chemo<strong>the</strong>rapy, and radio<strong>the</strong>rapy. 3–5<br />

Symptoms such as fatigue, frequency of urination,<br />

bleeding, weight loss, and ascites are<br />

commonly experienced by patients, particularly<br />

those with ovarian cancers. 6 Once diagnosed,<br />

gynecological cancer patients often go<br />

on to face a prolonged course of treatments<br />

which contribute to fur<strong>the</strong>r symptoms such as<br />

chemo<strong>the</strong>rapy-induced alopecia, 7 dermatolog-<br />

64 www.SupportiveOncology.net THE JOURNAL OF SUPPORTIVE ONCOLOGY

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