Drake Emily K, Weeks Lori E, van Manen Michael, Taylor Dani, Ricci Ian, Curran Janet
Faculty of Health, Dalhousie University, Halifax, NS, Canada.
School of Nursing, Dalhousie University, Halifax, NS, Canada.
Qual Health Res. 2025 Aug;35(9):1007-1018. doi: 10.1177/10497323241279083. Epub 2024 Nov 5.
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.
虽然癌症倡导团体在推动肿瘤护理进展方面发挥了关键作用，但支持患有晚期癌症的年轻人过渡到姑息治疗仍然是一项复杂的挑战。医疗服务提供者可能不提供姑息治疗服务，年轻人自己也可能不寻求此类服务。尽管人们已经认识到姑息治疗能为年轻人及其家庭带来价值，但情况依然如此。本研究的目的是探讨癌症倡导者可以采取哪些措施来支持患有晚期癌症的年轻人（18至39岁）过渡到姑息治疗。基于社区的研究视角支持通过社交媒体与来自美国和加拿大的#AYACSM（青少年和青年癌症社会运动）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；支持医疗服务提供者的教育；动员知识并分享故事；以及利用技术进行宣传工作。青年癌症倡导必须涵盖从预防到生命终结的整个癌症护理过程。在支持年轻人过渡到姑息治疗服务以及将姑息治疗服务融入其中的宣传工作方面存在差距。需要有创造性和创新性的宣传方法。本研究还展示了通过现有的在线社区进行定性研究的机会，这是一种有利于基于社区研究的方法。
