"任何能够澄清这种经历或使之人性化的人都会帮上大忙":癌症易感综合征患者对基因组健康和护理认知的解释性描述。

IF 2.7 3区 医学 Q1 NURSING
Rebecca Puddester, Vanessa Francis, Mike Warren, April Pike, Joy Maddigan, Angela Hyde, Kathleen Stevens, Holly Etchegary
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引用次数: 0

摘要

目的:基因组检测在肿瘤治疗中的应用越来越多。然而,患有遗传性癌症易感性综合征(CPS)的个体在导航终身CPS医疗保健考虑时遇到挑战。本研究的目的是描述患有CPS的个体的医疗保健经历和他们对基因组知情护理的看法。方法:解释性描述(ID)是在这个以患者为导向的研究中使用的定性方法,与两个有CPS生活经验的个体合作进行。参与者被招募参加使用各种公共和提供者/患者网络抽样资源的访谈。归纳数据分析遵循Sally Thorne所描述的ID分析的一般步骤。结果:在2023年4月至8月期间,37名自我报告患有CPS的人参加了采访。确定了两个主要主题:1),当基因组知识是力量时,以及2),在CPS护理中护理角色的可接受性。参与者将基因组知识描述为个人和家庭赋权的一种形式,但许多人报告说,与cps相关的知识在医疗保健系统中是无法获得的。这往往导致医疗保健经验不足和支离破碎。虽然参与者报告在他们的CPS护理中很少有护理参与,但有一个共识,即加强护理的贡献可能是有益的。他们特别赞同专门的肿瘤基因组护理角色的潜在价值。结论:研究结果强调了患者认可的护士在一般和专业水平上为改善癌症基因组护理做出贡献的机会。研究结果可用于为CPS患者提供新的临床护理模式。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
"Anybody who can clarify or humanize the experience would be such a help": An interpretive description of perceptions of genomic health and nursing care in individuals with cancer predisposition syndromes.

Purpose: There is increased use of genomic testing in oncology care. Yet, individuals with hereditary cancer predisposition syndromes (CPS) experience challenges when navigating the lifelong CPS healthcare considerations. The purpose of this study is to describe the healthcare experiences of individuals living with CPS and their perceptions of genomic-informed nursing care.

Methods: Interpretive description (ID) was the qualitative approach used in this patient-oriented research study, conducted in partnership with two individuals with lived experience of CPS. Participants were recruited to participate in an interview using a variety of public and provider/patient network sampling sources. Inductive data analysis was guided by general steps for ID analysis as described by Sally Thorne.

Results: Thirty-seven individuals who self-reported a CPS participated in interviews between April and August 2023. Two primary themes were identified: 1), When genomic knowledge is power, and 2), Perceived acceptability of nursing roles in CPS care. Participants described genomic knowledge as a form of personal and family empowerment, but many reported that CPS-related knowledge is inaccessible in the healthcare system. This often resulted in healthcare experiences that were insufficient and fragmented. Although participants reported minimal nursing involvement in their CPS care, there was a consensus that enhanced nursing contributions could be beneficial. They particularly endorsed the potential value of a dedicated oncology genomic nursing role.

Conclusions: Findings highlight patient-endorsed opportunities for nurses at the generalized and specialized levels to contribute to improved cancer genomic care. Findings can be used to inform novel models of clinical care for individuals with CPS.

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来源期刊
CiteScore
4.40
自引率
3.60%
发文量
109
审稿时长
57 days
期刊介绍: The European Journal of Oncology Nursing is an international journal which publishes research of direct relevance to patient care, nurse education, management and policy development. EJON is proud to be the official journal of the European Oncology Nursing Society. The journal publishes the following types of papers: • Original research articles • Review articles
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