倡导者如何支持身患癌症的年轻人及其向姑息关怀的过渡。

IF 2.6 2区 医学 Q2 INFORMATION SCIENCE & LIBRARY SCIENCE Qualitative Health Research Pub Date : 2024-11-05 DOI:10.1177/10497323241279083
Emily K Drake, Lori E Weeks, Michael van Manen, Dani Taylor, Ian Ricci, Janet Curran
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引用次数: 0

摘要

虽然癌症权益团体在推动肿瘤关怀方面发挥了关键作用,但支持晚期癌症患者向姑息关怀过渡仍然是一项复杂的挑战。医疗服务提供者可能不会提供姑息关怀服务,年轻人自己也不会参与。这与姑息关怀能为年轻人及其家庭提供的公认价值背道而驰。本研究旨在探讨癌症倡导者可以做些什么来支持晚期癌症患者(18-39 岁)向姑息关怀过渡。本研究从社区研究的角度出发,通过社交媒体与来自美国和加拿大的 #AYACSM(青少年和年轻成人癌症社会运动)成员进行互动。分析以反思性主题分析方法为指导,阐明了四个以行动为导向的主题:倡导改善护理服务;支持医疗保健提供者教育;动员知识和分享故事;利用技术开展宣传工作。青壮年癌症宣传必须贯穿从预防到生命终结的整个癌症治疗过程。在支持年轻人向姑息关怀服务过渡和整合姑息关怀服务方面,宣传工作还存在差距。我们需要创造性和创新性的宣传方法。这项研究还显示了通过现有在线社区开展定性研究的机会,这种方法有利于开展以社区为基础的研究。
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How Advocates Can Support Young Adults Living With Cancer and Their Transition to Palliative Care.

While the cancer advocacy community has been pivotal in progressing oncology care, supporting young adults with advanced cancer transitioning to palliative care continues to be a complex challenge. Palliative care services may not be offered by healthcare providers or engaged by young people themselves. This is in the face of the recognized value that palliative care can provide young people and their families. The purpose of this study was to explore what cancer advocates can do to support young adults (18-39 years of age) with advanced cancer in their transition to palliative care. A community-based research perspective supported engagement with members of the #AYACSM (Adolescent and Young Adult Cancer Societal Movement) from the United States and Canada through social media. Analysis was guided by a reflexive thematic analysis approach to articulate four action-oriented themes: advocate for advances in the delivery of care; support healthcare provider education; mobilize knowledge and share stories; and leverage technology for advocacy efforts. Young adult cancer advocacy must span the continuum of cancer care from prevention to end-of-life. There exist gaps in advocacy efforts surrounding support for young people in their transition to and the integration of palliative care services. Creative and innovative advocacy approaches are needed. This study also showed opportunities for conducting qualitative research through an existing online community as an approach conducive to community-based research.

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来源期刊
CiteScore
6.80
自引率
6.20%
发文量
109
期刊介绍: QUALITATIVE HEALTH RESEARCH is an international, interdisciplinary, refereed journal for the enhancement of health care and to further the development and understanding of qualitative research methods in health care settings. We welcome manuscripts in the following areas: the description and analysis of the illness experience, health and health-seeking behaviors, the experiences of caregivers, the sociocultural organization of health care, health care policy, and related topics. We also seek critical reviews and commentaries addressing conceptual, theoretical, methodological, and ethical issues pertaining to qualitative enquiry.
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