Financial and Legal Burdens and Discrimination after Surviving a Childhood Cancer Diagnosis in Germany-Results from a Survey in the German Childhood Cancer Survivor Community.

IF 1.2 4区 医学 Q4 ONCOLOGY
Bjoern Hessing, Jette Luedersen, Lisa Scharping, Astrid Zehbe, Jennifer Gotta, Marie Alfes, Eva-Maria Wild
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引用次数: 0

Abstract

Purpose: Since survival rates have improved over recent decades, there is an increasing number of childhood cancer survivors. Besides the late medical effects of the therapy, survivors experience financial and legal burdens and discrimination linked to their cancer history. The objective of this study was to examine the prevalence and types of discrimination faced by childhood cancer survivors in Germany. Methods: We conducted a survey in the German childhood cancer community assessing domains of discrimination. Results: Within 111 participants, recruited through social media campaigns and direct outreach to organizations in the field of pediatric oncology, 76.6% (n = 85) reported experiencing at least one form of discrimination. The most common areas of discrimination involved various types of insurance coverage (51.4%), employment (27.9%), and educational matters (16.2%). Conclusion: Our findings highlight the significant prevalence of lifelong financial and legal burdens and discrimination among childhood cancer survivors. It reveals the urgent need for education, awareness campaigns regarding cancer survival, and legal measures to end discrimination and to establish equal treatment in terms of social and financial issues. Our results contribute to the ongoing discussion surrounding the law named "Right to be Forgotten" and advocate an implementation in Germany.

德国儿童癌症诊断存活后的经济和法律负担和歧视——来自德国儿童癌症幸存者社区的一项调查结果。
目的:由于近几十年来生存率有所提高,儿童癌症幸存者的数量越来越多。除了治疗的后期医疗影响外,幸存者还经历了与癌症病史相关的经济和法律负担以及歧视。本研究的目的是调查德国儿童癌症幸存者所面临的歧视的流行程度和类型。方法:我们在德国儿童癌症社区进行了一项调查,评估歧视领域。结果:在111名参与者中,通过社交媒体活动和直接接触儿科肿瘤学领域的组织招募,76.6% (n = 85)报告至少经历过一种形式的歧视。最常见的歧视领域涉及各类保险(51.4%)、就业(27.9%)和教育事务(16.2%)。结论:我们的研究结果突出了儿童癌症幸存者终身经济和法律负担和歧视的显著普遍性。报告显示,迫切需要开展关于癌症生存的教育和宣传活动,并采取法律措施,以结束歧视,并在社会和财政问题方面建立平等待遇。我们的研究结果有助于围绕“被遗忘权”法律的持续讨论,并主张在德国实施。
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来源期刊
CiteScore
3.70
自引率
15.00%
发文量
114
期刊介绍: Journal of Adolescent and Young Adult Oncology (JAYAO) breaks new ground as the first cancer journal dedicated to all aspects of adolescent and young adult (AYA)-aged cancer patients and survivors. JAYAO is the only central forum for peer-reviewed articles, reviews, and research in the field, bringing together all AYA oncology stakeholders and professionals across disciplines, including clinicians, researchers, psychosocial and supportive care providers, and pediatric and adult cancer institutions.
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