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德国儿童癌症幸存者及其父母的后续护理需求和动机因素

Follow-up care needs and motivational factors for childhood cancer survivors and their parents in Germany.

作者信息

Ekaterina Aleshchenko, Thorsten Langer, Gabriele Calaminus, Juliane Glogner, Kathrin Hellwig, Pietro Trocchi, Enno Swart, Katja Baust

机构信息

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

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

出版信息

Sci Rep. 2025 Jan 6;15(1):972. doi: 10.1038/s41598-024-84156-y.

Abstract

This study aims to explore the long-term follow-up needs and motivations of childhood and adolescent cancer survivors and their parents to attend follow-up care in Germany, given the inconsistent adherence to national follow-up guidelines. We developed interview guidelines based on the Theory of Planned Behavior and the stereotype priming model to explore motivations and barriers related to follow-up care. We conducted a total of 36 episodic narrative interviews with adolescent (ages 13-17) and adult (ages 18-45) survivors of pediatric cancer, as well as their parents. We analyzed the transcripts qualitatively using thematic content analysis, while quantitative analysis through multiple regression models was used to support the qualitative findings and identify predictors of follow-up care attendance. We identified key themes across age groups, including a strong need to "return to normal life" and a desire for ongoing organizational and social support. Both survivors and parents highlighted specific needs, including timely, personalized health information and practical help with healthcare logistics. Adolescents particularly valued emotional support from their social circles, whereas adult survivors and parents expressed a need for more structured psychosocial and logistical assistance. The findings suggest that both age and the time elapsed since diagnosis play a role in affecting survivors' perceived control to attend guideline-based follow-up care. Our findings suggest that a differentiated approach to follow-up care, with age-appropriate support structures, and tailored guidelines, may improve adherence among survivors and their parents. To enhance follow-up care adherence among cancer survivors, healthcare providers could offer tailored, age-specific information and practical assistance with healthcare logistics. Additionally, providing emotional and psychosocial support resources for both survivors and their parents can help address their unique needs at different stages of recovery.Trial registration: Registered at German Clinical Trial Register (ID DRKS00025960 and DRKS00026092).

摘要

鉴于对国家随访指南的依从性不一致,本研究旨在探讨德国儿童和青少年癌症幸存者及其父母进行长期随访的需求和动机,以及他们参加后续护理的情况。我们基于计划行为理论和刻板印象启动模型制定了访谈指南,以探讨与后续护理相关的动机和障碍。我们总共对青少年(13 - 17岁)和成年(18 - 45岁)的儿科癌症幸存者及其父母进行了36次情景叙事访谈。我们使用主题内容分析法对访谈记录进行定性分析,同时通过多元回归模型进行定量分析,以支持定性研究结果并确定后续护理参与度的预测因素。我们确定了各年龄组的关键主题,包括强烈的“回归正常生活”需求以及对持续的组织和社会支持的渴望。幸存者和父母都强调了具体需求,包括及时、个性化的健康信息以及医疗后勤方面的实际帮助。青少年尤其重视来自社交圈子的情感支持,而成人幸存者和父母则表示需要更有条理的心理社会和后勤援助。研究结果表明,年龄和诊断后经过的时间都在影响幸存者参与基于指南的后续护理的感知控制方面发挥作用。我们的研究结果表明,采用差异化的后续护理方法,提供适合年龄的支持结构和量身定制的指南,可能会提高幸存者及其父母的依从性。为了提高癌症幸存者对后续护理的依从性,医疗服务提供者可以提供量身定制的、针对特定年龄的信息以及医疗后勤方面的实际帮助。此外,为幸存者及其父母提供情感和心理社会支持资源有助于满足他们在康复不同阶段的独特需求。试验注册:在德国临床试验注册中心注册(ID DRKS00025960和DRKS00026092)。

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