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对卵巢癌女性社会关切的质性分析

A qualitative analysis of social concerns of women with ovarian cancer.

作者信息

Ferrell Betty R, Smith Stephany L, Ervin Kate S, Itano Jennifer, Melancon Cindy

机构信息

Department of Nursing Research and Education, City of Hope National Medical Center, Duarte, CA 91010, USA.

出版信息

Psychooncology. 2003 Oct-Nov;12(7):647-63. doi: 10.1002/pon.681.

Abstract

A diagnosis of ovarian cancer requires a woman to reevaluate her interactions with family, friends, and employers, and cope with unexpected and unwanted changes in areas spanning from financial stability to sexuality and fertility. Social well-being is the aspect of a patient's overall quality of life that encompasses these topics, as it has evolved to represent activities related to roles and relationships at work and at home. The purpose of this study was to explore the social well-being of women with ovarian cancer to better define their needs for the health care community. Data consisted of all correspondence (n = 21,806) sent to 'Conversations!: The newsletter for those fighting ovarian cancer' by women with ovarian cancer from 1994 to 2000. Using ethnographic, qualitative research methods, statements related to the impact of disease were bracketed and coded within physical, psychological, social, and spiritual domains according to the City of Hope Quality of Life Ovarian Cancer Instrument. Comments reflecting social well-being were categorized in sub-themes and reviewed for content. Statements related to social support were most common (n = 251) reflecting the need for support from family, friends, and other women with ovarian cancer. Distress regarding the genetic association of the disease comprised a major theme (n = 73). Family relationships were also discussed (n = 146) in light of the stress of changing roles and relationships at home. Issues related to employment and returning to work (n = 74) focused on both the difficulties in taking time off work to receive treat-ment and sense of achievement felt upon returning to work and regaining normalcy. The themes identified in this study challenge healthcare professionals to provide increased disease-specific support, as well as concomitant sup-port for husbands/partners and children of patients. Additional information on genetic testing and counseling for women at-risk due to a family history of ovarian cancer is also needed.

摘要

卵巢癌的诊断要求女性重新评估自己与家人、朋友和雇主的互动,并应对从经济稳定到性与生育等诸多领域出现的意外且令人不快的变化。社会福祉是患者整体生活质量的一个方面,涵盖了这些话题,因为它已逐渐代表与工作和家庭中的角色及关系相关的活动。本研究的目的是探索卵巢癌女性的社会福祉,以便更好地明确她们对医疗保健界的需求。数据包括1994年至2000年期间卵巢癌女性寄给《对话!:卵巢癌抗争者时事通讯》的所有信件(n = 21,806)。运用人种志定性研究方法,根据希望之城卵巢癌生活质量量表,将与疾病影响相关的陈述在身体、心理、社会和精神领域进行分类和编码。反映社会福祉的评论被归类为子主题并进行内容审查。与社会支持相关的陈述最为常见(n = 251),反映了对家人、朋友和其他卵巢癌女性支持的需求。对该疾病遗传关联的担忧是一个主要主题(n = 73)。还讨论了家庭关系(n = 146),涉及家庭角色和关系变化带来的压力。与就业和重返工作相关的问题(n = 74)既关注请假接受治疗的困难,也关注重返工作并恢复正常后的成就感。本研究确定的这些主题促使医疗保健专业人员提供更多针对疾病的支持,以及对患者丈夫/伴侣和子女的相应支持。此外,还需要为因卵巢癌家族史而处于风险中的女性提供有关基因检测和咨询的更多信息。

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