Grace M Mackie, Frances Boyle, Sophie Lewis, Andrea L Smith
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引用次数: 0
Abstract
Purpose: This study explored the value of metastatic breast cancer (MBC) support groups, and factors that affect attendance, from the perspective of people with MBC.
Methods: Semi-structured interviews were conducted with 28 women with MBC (support group attendees n = 16; non-attendees n = 12) between January 2022 and July 2023. Data were analysed using an inductive approach to thematic analysis.
Results: Three themes were generated: the value of sharing experiential knowledge, spaces for open and honest conversations, and opportunities to find connection and community. These factors were the main reasons that some participants valued, and chose to attend, an MBC support group. Stage-specificity and professional facilitation were identified as important aspects of group structure. Key reasons for non-attendance were concerns about misinformation, confronting the death of group members, and satisfaction with existing support networks.
Conclusions: MBC support groups are beneficial for some people with MBC, providing opportunities to connect with others with the same diagnosis. For others, different forms of peer support such as online forums or one-on-one support may be preferred. We argue that ensuring those with MBC have equal access to the peer support they need will be essential in supporting people to live as well as possible with MBC.
Implications for cancer survivors: MBC support groups, if appropriately led, can provide emotional and informational benefits for people with MBC. This research may also have relevance to other metastatic cancers where novel therapies are extending survival, resulting in an emerging cancer population with distinct supportive and survivorship needs.
目的:本研究从 MBC 患者的角度探讨了转移性乳腺癌(MBC)支持小组的价值以及影响参加人数的因素:在 2022 年 1 月至 2023 年 7 月期间,对 28 名患有 MBC 的女性(支持小组参加者 n = 16;未参加者 n = 12)进行了半结构式访谈。采用归纳式主题分析方法对数据进行了分析:产生了三个主题:分享经验知识的价值、开诚布公的对话空间以及找到联系和社区的机会。这些因素是一些参与者重视并选择参加乳腺增生互助小组的主要原因。特定阶段和专业促进被认为是小组结构的重要方面。不参加的主要原因是担心信息错误、面对小组成员的死亡以及对现有支持网络的满意度:MBC 支持小组为一些 MBC 患者提供了与同病相怜的人建立联系的机会,对他们大有裨益。对其他人来说,不同形式的同伴支持(如在线论坛或一对一支持)可能更受欢迎。我们认为,确保 MBC 患者能够平等地获得所需的同伴支持,对于支持 MBC 患者尽可能过上好的生活至关重要:MBC 支持小组如果领导得当,可以为 MBC 患者带来情感和信息方面的益处。这项研究也可能与其他转移性癌症有关,因为新型疗法延长了患者的生存期,从而产生了具有独特支持和生存需求的新兴癌症人群。
期刊介绍:
Cancer survivorship is a worldwide concern. The aim of this multidisciplinary journal is to provide a global forum for new knowledge related to cancer survivorship. The journal publishes peer-reviewed papers relevant to improving the understanding, prevention, and management of the multiple areas related to cancer survivorship that can affect quality of care, access to care, longevity, and quality of life. It is a forum for research on humans (both laboratory and clinical), clinical studies, systematic and meta-analytic literature reviews, policy studies, and in rare situations case studies as long as they provide a new observation that should be followed up on to improve outcomes related to cancer survivors. Published articles represent a broad range of fields including oncology, primary care, physical medicine and rehabilitation, many other medical and nursing specialties, nursing, health services research, physical and occupational therapy, public health, behavioral medicine, psychology, social work, evidence-based policy, health economics, biobehavioral mechanisms, and qualitative analyses. The journal focuses exclusively on adult cancer survivors, young adult cancer survivors, and childhood cancer survivors who are young adults. Submissions must target those diagnosed with and treated for cancer.