Collaço Nicole, Ralph Charlotte, Dawes Peter, Darlington Anne-Sophie, Davies Andrew, Ramanujachar Ramya, Hooker Louise, Sodergren Samantha
School of Health Sciences, University of Southampton, Southampton SO17 1BJ, UK.
Patient Partner.
Curr Oncol. 2025 Jun 19;32(6):361. doi: 10.3390/curroncol32060361.
As survival rates for teenagers and young adults (TYAs) with cancer exceed 80%, they are living longer post treatment, yet often experience prolonged health and quality of life concerns. Many TYAs also experience unmet support needs. This study aimed to identify TYAs support needs following treatment at a UK hospital and explore how and when TYAs prefer to receive support. This study involved two phases: Phase 1 involved semi-structured interviews with 16 TYAs, 1-6 years post-treatment, aged 16-25 years at time of treatment completion and examined their experiences of support services, and preferences for future care. Phase 2 consisted of co-design workshops with eight TYAs and feedback from five healthcare/allied professionals (HCAPs) to refine and develop recommendations. Phase 1 findings revealed six key themes: (1) survivorship as disrupted continuity; (2) negotiating legitimacy and relational safety in help seeking; (3) support offered vs. support sought: pathways of referral and self-initiation; (4) emotional readiness as context dependent and non-linear; (5) support as an ecosystem, not a moment; and (6) personalised autonomy in support engagement. Phase 2 findings informed recommendations that emphasise the importance of flexible, personalised, and accessible post-treatment support, with pathways of care/support that can adapt to TYAs changing needs and preferences over time.
由于青少年和青年癌症患者的生存率超过80%，他们在治疗后的寿命更长，但往往长期面临健康和生活质量方面的问题。许多青少年和青年癌症患者还存在未得到满足的支持需求。本研究旨在确定英国一家医院青少年和青年癌症患者治疗后的支持需求，并探讨他们希望如何以及何时获得支持。本研究包括两个阶段：第一阶段对16名治疗后1至6年、治疗结束时年龄在16至25岁之间的青少年和青年癌症患者进行了半结构式访谈，考察了他们对支持服务的体验以及对未来护理的偏好。第二阶段包括与8名青少年和青年癌症患者共同设计研讨会，以及5名医疗保健/相关专业人员（HCAPs）的反馈，以完善和制定建议。第一阶段的研究结果揭示了六个关键主题：（1）生存作为被打乱的连续性；（2）在寻求帮助时协商合法性和关系安全；（3）提供的支持与寻求的支持：转诊和自我启动的途径；（4）情绪准备状态取决于情境且是非线性的；（5）支持是一个生态系统，而非某个时刻；（6）支持参与中的个性化自主权。第二阶段的研究结果为相关建议提供了依据，这些建议强调了灵活、个性化和可及的治疗后支持的重要性，以及护理/支持途径应能随着时间的推移适应青少年和青年癌症患者不断变化的需求和偏好。
