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步入成年:儿童癌症幸存者及其父母对从儿科护理过渡到成人护理的看法。

Stepping into adulthood: pediatric cancer survivors and their parents' perspectives on the transition from pediatric to adult care.

作者信息

Ekaterina Aleshchenko, Thorsten Langer, Gabriele Calaminus, Juliane Glogner, Swart Enno, Baust Katja

机构信息

Institute of Social Medicine and Health Systems Research, Faculty of Medicine, Otto von Guericke University, Magdeburg, Germany.

University Hospital of Schleswig-Holstein, Campus Lübeck, Lübeck, Germany.

出版信息

BMC Health Serv Res. 2025 Feb 4;25(1):204. doi: 10.1186/s12913-025-12326-3.

Abstract

AIMS

The transition from pediatric to adult healthcare is crucial for adolescent cancer survivors due to the potential lifelong late effects of their treatment. Despite the importance of ongoing follow-up care, attendance often declines after transitioning to adult services. This study explores the perspectives of adolescent and adult pediatric cancer survivors and their families on this transition process.

METHODS

Using the Theory of Planned Behaviour, we developed interview guidelines and conducted 36 episodic narrative interviews with survivors and their parents. Our analysis focuses on their transition experiences and expectations, as part of the broader VersKiK-Study aimed at improving (long-term) follow-up care for pediatric cancer survivors in Germany.

RESULTS

Findings show that although transitioning is viewed as a significant step toward adulthood, a lack of preparedness and anxiety can hinder a shift between healthcare systems. Survivors expressed the need to initiate the transition process while still under pediatric care. Clear and effective communication was identified as key to ensuring a smooth transition. Adult survivors acknowledged the transition's importance in fostering self-reliance and independence.

CONCLUSIONS

To facilitate better outcomes, transition planning should include early introductions to adult care providers and strong communication strategies to address the emotional and psychosocial challenges faced by adolescent cancer survivors. Aligning transition practices with the needs and concerns of survivors could enhance follow-up care engagement, ultimately improving long-term outcomes for pediatric cancer survivors.

摘要

目的

由于青少年癌症幸存者的治疗可能会产生潜在的终身晚期影响,从儿科医疗向成人医疗的过渡对他们来说至关重要。尽管持续的后续护理很重要,但在过渡到成人服务后,就诊率往往会下降。本研究探讨了青少年和成年儿科癌症幸存者及其家人对这一过渡过程的看法。

方法

我们运用计划行为理论制定了访谈指南,并对幸存者及其父母进行了36次情景叙事访谈。作为旨在改善德国儿科癌症幸存者(长期)后续护理的更广泛的VersKiK研究的一部分,我们的分析重点关注他们的过渡经历和期望。

结果

研究结果表明,尽管过渡被视为迈向成年的重要一步,但准备不足和焦虑可能会阻碍医疗系统之间的转变。幸存者表示,在仍接受儿科护理时就需要启动过渡过程。明确而有效的沟通被认为是确保顺利过渡的关键。成年幸存者认识到过渡在培养自立和独立方面的重要性。

结论

为了促进更好的结果,过渡计划应包括尽早介绍成人护理提供者,并制定强有力的沟通策略,以应对青少年癌症幸存者面临的情感和心理社会挑战。使过渡措施与幸存者的需求和关注点保持一致,可以提高后续护理的参与度,最终改善儿科癌症幸存者的长期结局。

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