目的:病耻感是儿科肿瘤学接受卫生保健的一个未被研究的障碍。我们试图探索污名体验,包括它对癌症治疗决策的影响,并确定减轻危地马拉骨肉瘤和视网膜母细胞瘤患者病耻感的策略,乔丹,津巴布韦。
方法:参与者包括护理人员,青少年患者(12-19岁),和卫生保健临床医生。基于“健康污名和歧视框架”(HSDF)的半结构化访谈指南适用于每个站点。面试是用英语进行的,西班牙语,阿拉伯语,或者Shona,录音,翻译,并转录。专题分析侧重于污名做法,经验,结果,司机,缓解剂,和干预。
结果:我们进行了56次访谈(28名护理人员,19名卫生保健临床医生,9名患者;危地马拉20名,21在约旦,15在津巴布韦)。主要主题被分为用于使HSDF适应全球儿科癌症护理的类别。主题在所有网站上都有类似的描述,年龄,和诊断,注意到具体的文化细微差别。小儿癌症的污名被描述为从诊断开始的孤立和情感体验,包括内在化和联想的污名。污名影响决策并导致负面结果,包括延迟诊断,放弃治疗,后悔,和社会心理脆弱。克服污名导致积极的结果,包括韧性,治疗依从性,骄傲,和宣传。确定的污名驱动因素和缓解因素与潜在的干预措施有关。
结论:参与者描述了超越地理的共同污名体验,文化背景,年龄,和诊断。污名表现有可能影响医疗决策并影响长期心理结果。旨在减轻污名的污名评估工具和干预措施,包括针对儿科癌症的教育计划和支持小组,应成为未来研究的重点。
OBJECTIVE: Stigma is an understudied barrier to health care acceptance in pediatric oncology. We sought to explore the stigma experience, including its impact on cancer treatment decision making, and identify strategies to mitigate stigma for patients with osteosarcoma and
retinoblastoma in Guatemala, Jordan, and Zimbabwe.
METHODS: Participants included caregivers, adolescent patients (age 12-19 years), and health care clinicians. A semistructured interview guide based on The Health Stigma and Discrimination Framework (HSDF) was adapted for use at each site. Interviews were conducted in English, Spanish, Arabic, or Shona, audio-recorded, translated, and transcribed. Thematic analysis focused on stigma practices, experiences, outcomes, drivers, mitigators, and interventions.
RESULTS: We conducted 56 interviews (28 caregivers, 19 health care clinicians, nine patients; 20 in Guatemala, 21 in Jordan, 15 in Zimbabwe). Major themes were organized into categories used to adapt the HSDF to global pediatric cancer care. Themes were described similarly across all sites, ages, and diagnoses, with specific cultural nuances noted. Pediatric cancer stigma was depicted as an isolating and emotional experience beginning at diagnosis and including internalized and associative stigma. Stigma affected decision making and contributed to negative outcomes including delayed diagnosis, treatment abandonment, regret, and psychosocial fragility. Overcoming stigma led to positive outcomes including resilience, treatment adherence, pride, and advocacy. Identified stigma drivers and mitigators were linked to potential interventions.
CONCLUSIONS: Participants describe a shared stigma experience that transcends geography, cultural context, age, and diagnosis. Stigma manifestations have the potential to impact medical decision making and affect long-term psychological outcomes. Stigma assessment tools and interventions aimed at stigma mitigation including educational initiatives and support groups specific to pediatric cancer should be the focus of future research.