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“尊重我们的尊严”:一项关于癌症 LGBTQ 患者的经历和建议的定性研究。

"Treat us with dignity": a qualitative study of the experiences and recommendations of lesbian, gay, bisexual, transgender, and queer (LGBTQ) patients with cancer.

机构信息

University of Rochester, Saunders Research Building, 265 Crittenden Blvd, Box 420658, Rochester, NY, 14642, USA.

National LGBT Cancer Network, New York, NY, USA.

出版信息

Support Care Cancer. 2019 Jul;27(7):2525-2532. doi: 10.1007/s00520-018-4535-0. Epub 2018 Nov 8.

Abstract

PURPOSE

Despite indications that lesbian, gay, bisexual, transgender, and queer (LGBTQ) patients have unique needs when seeking healthcare, the experiences of LGBTQ patients in the context of cancer care have not been fully explored. This qualitative study investigated recommendations offered by LGBTQ patients with cancer for improving cancer care.

METHODS

Two hundred seventy-three LGBTQ people across the USA who had been diagnosed with cancer completed an online survey that included open-ended questions. Using responses to these questions, two researchers independently conducted open coding. A code book was generated collaboratively and the data were coded independently. Codes were clustered and refined and the data were independently re-coded.

RESULTS

Five themes emerged. LGBTQ patients with cancer: (1) are affected by providers' LGBTQ-specific knowledge and skills, assumptions, and mistreatment; (2) negotiate disclosure of identities based on safety of clinical encounters; (3) have differing experiences based on multiple intersecting identities; (4) receive more effective care when members of their support networks are included; and (5) are self-advocates and undergo transformative experiences in the face of morbidity and marginalization.

CONCLUSIONS

LGBTQ cancer survivors report challenges accessing competent cancer treatment. To address this, cancer care providers should provide safe clinical encounters, inquire about and respond professionally to patients' identities and identifiers, include chosen support people, provide care relevant to patients' gender identities, and address treatments' effects on sexuality. Training providers about diverse LGBTQ communities and acknowledging the strengths of LGBTQ patients with cancer may improve provider/patient relationships. Provider training could be created based on these principles.

摘要

目的

尽管有迹象表明,同性恋、双性恋、跨性别、变性和酷儿(LGBTQ)患者在寻求医疗保健时具有独特的需求,但 LGBTQ 患者在癌症护理背景下的体验尚未得到充分探索。本定性研究调查了癌症患者 LGBTQ 提出的改善癌症护理的建议。

方法

美国各地 273 名被诊断患有癌症的 LGBTQ 人完成了一项在线调查,其中包括开放式问题。两位研究人员使用对这些问题的回答进行了开放式编码。合作生成了一个代码簿,并独立对数据进行了编码。对代码进行聚类和精炼,并独立重新对数据进行编码。

结果

出现了五个主题。癌症 LGBTQ 患者:(1)受到提供者 LGBTQ 特定知识和技能、假设和虐待的影响;(2)根据临床遇到的安全性来协商身份披露;(3)基于多种交叉身份,具有不同的体验;(4)当他们的支持网络成员包括在内时,会获得更有效的护理;(5)是自我倡导者,并在面对发病和边缘化时经历变革性体验。

结论

LGBTQ 癌症幸存者报告在获得有能力的癌症治疗方面存在挑战。为了解决这个问题,癌症护理提供者应该提供安全的临床环境,询问并专业地回应患者的身份和标识符,包括选择的支持人员,提供与患者性别认同相关的护理,并解决治疗对性的影响。对不同的 LGBTQ 社区进行培训,并承认 LGBTQ 癌症患者的优势,可能会改善医患关系。可以根据这些原则为提供者培训创建内容。

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