Department of Communication, University of South Florida.
Health Outcomes and Behavior Program, Moffitt Cancer Center.
Health Commun. 2024 Sep;39(10):1942-1954. doi: 10.1080/10410236.2023.2248677. Epub 2023 Aug 25.
previvors - individuals who have a genetic mutation that increases their lifetime risk of developing breast or ovarian cancer - have unique information needs. Previvors can experience distress and uncertainty when these needs are not met, which can have negative consequences on their physical and psychological health. Previous research suggests meeting previvors' information needs is one way to combat these potential harmful effects. However, limited past research has examined previvors' perceptions of the helpfulness of information. Therefore, through surveying 101 previvors, this study explored previvors' perceptions of the (un)helpfulness of information, what (lack of) barriers previvors face to finding desired information, and the information sources they utilized. A thematic analysis revealed that previvors generally viewed information as helpful (through empowerment, coping, camaraderie, and action) but not always (evident in information overload). Previvors also reported several barriers (such as "the healthcare system in general", exclusivity, and uncertainty), while others reported a lack of resistance to finding desired information. Additionally, frequencies were calculated to find that various healthcare providers, support groups, and friends and family were common information sources. Taken together, these results offer a psychosocial model for understanding the previvor information journey, displaying how the themes are interconnected and unique for each previvor.
生存者 - 个体具有增加其患乳腺癌或卵巢癌终身风险的基因突变 - 具有独特的信息需求。当这些需求得不到满足时，生存者会感到痛苦和不确定，这可能对他们的身心健康产生负面影响。先前的研究表明，满足生存者的信息需求是对抗这些潜在有害影响的一种方法。然而，过去有限的研究检查了生存者对信息有用性的看法。因此，通过对 101 名生存者进行调查，本研究探讨了生存者对信息的（不）有用性的看法、生存者在寻找所需信息时面临的（缺乏）障碍以及他们利用的信息来源。主题分析显示，生存者普遍认为信息是有帮助的（通过赋权、应对、同志情谊和行动），但并非总是如此（信息过载明显）。生存者还报告了一些障碍（例如“一般的医疗保健系统”、排他性和不确定性），而其他人则报告说，他们没有抗拒寻找所需的信息。此外，还计算了频率，以发现各种医疗保健提供者、支持小组以及朋友和家人是常见的信息来源。综上所述，这些结果提供了一个理解生存者信息之旅的心理社会模型，展示了主题如何相互关联并对每个生存者都是独特的。
