Mackie Grace M, Boyle Frances, Lewis Sophie, Smith Andrea L
Faculty of Medicine and Health, University of Sydney, Camperdown, NSW, Australia.
Mater Hospital, Sydney, NSW, Australia.
J Cancer Surviv. 2024 Jul 24. doi: 10.1007/s11764-024-01639-7.
This study explored the value of metastatic breast cancer (MBC) support groups, and factors that affect attendance, from the perspective of people with MBC.
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.
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.
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.
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.
本研究从转移性乳腺癌（MBC）患者的角度探讨了MBC支持小组的价值以及影响参与度的因素。
2022年1月至2023年7月期间，对28名MBC女性患者进行了半结构化访谈（支持小组参与者n = 16；非参与者n = 12）。采用归纳法进行主题分析来分析数据。
产生了三个主题：分享经验知识的价值、坦诚交流的空间以及建立联系和社区的机会。这些因素是一些参与者重视并选择参加MBC支持小组的主要原因。特定阶段和专业引导被确定为小组结构的重要方面。不参加的主要原因包括对错误信息的担忧、面对小组成员的死亡以及对现有支持网络的满意。
MBC支持小组对一些MBC患者有益，为他们提供了与同病患者建立联系的机会。对于其他人来说，可能更喜欢在线论坛或一对一支持等不同形式的同伴支持。我们认为，确保MBC患者平等获得他们所需的同伴支持对于帮助他们尽可能良好地应对MBC至关重要。
如果得到适当引导，MBC支持小组可以为MBC患者提供情感和信息方面的益处。这项研究可能也与其他转移性癌症相关，在这些癌症中，新疗法延长了生存期，从而产生了一个有独特支持和生存需求的新兴癌症群体。
