Bjoern Hessing, Jette Luedersen, Lisa Scharping, Astrid Zehbe, Jennifer Gotta, Marie Alfes, Eva-Maria Wild
{"title":"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。","authors":"Bjoern Hessing, Jette Luedersen, Lisa Scharping, Astrid Zehbe, Jennifer Gotta, Marie Alfes, Eva-Maria Wild","doi":"10.1089/jayao.2025.0026","DOIUrl":null,"url":null,"abstract":"<p><p><b><i>Purpose:</i></b> 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. <b><i>Methods:</i></b> We conducted a survey in the German childhood cancer community assessing domains of discrimination. <b><i>Results:</i></b> Within 111 participants, recruited through social media campaigns and direct outreach to organizations in the field of pediatric oncology, 76.6% (<i>n</i> = 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%). <b><i>Conclusion:</i></b> 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.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":""},"PeriodicalIF":1.2000,"publicationDate":"2025-06-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"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.\",\"authors\":\"Bjoern Hessing, Jette Luedersen, Lisa Scharping, Astrid Zehbe, Jennifer Gotta, Marie Alfes, Eva-Maria Wild\",\"doi\":\"10.1089/jayao.2025.0026\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><p><b><i>Purpose:</i></b> 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. <b><i>Methods:</i></b> We conducted a survey in the German childhood cancer community assessing domains of discrimination. <b><i>Results:</i></b> Within 111 participants, recruited through social media campaigns and direct outreach to organizations in the field of pediatric oncology, 76.6% (<i>n</i> = 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%). <b><i>Conclusion:</i></b> 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.</p>\",\"PeriodicalId\":14769,\"journal\":{\"name\":\"Journal of adolescent and young adult oncology\",\"volume\":\" \",\"pages\":\"\"},\"PeriodicalIF\":1.2000,\"publicationDate\":\"2025-06-24\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Journal of adolescent and young adult oncology\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1089/jayao.2025.0026\",\"RegionNum\":4,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q4\",\"JCRName\":\"ONCOLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of adolescent and young adult oncology","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1089/jayao.2025.0026","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q4","JCRName":"ONCOLOGY","Score":null,"Total":0}
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.
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.
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.