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“让他死吧。这是他自找的”:坦桑尼亚癌症污名化的定性研究

"Let him die. He caused it": A qualitative study on cancer stigma in Tanzania.

作者信息

Mwobobia Judith M, Knettel Brandon A, Headley Jennifer, Msoka Elizabeth F, Tarimo Clotilda S, Katiti Victor, Juhlin Erika, Osazuwa-Peters Nosayaba

机构信息

Duke Global Health Institute, Duke University, Durham, North Carolina, United States of America.

Duke University School of Nursing, Durham, North Carolina, United States of America.

出版信息

PLOS Glob Public Health. 2024 Jun 12;4(6):e0003283. doi: 10.1371/journal.pgph.0003283. eCollection 2024.

Abstract

Cancer stigma presents a critical barrier to care seeking, contributing to delayed presentation and poor cancer outcomes worldwide. The burden of cancer in Tanzania is on the rise, with cancer being the third-leading cause of death in the country. Despite rising incidence and poor outcomes of cancer, cancer-related stigma interventions have received low prioritization. There is a need for sound research that focuses on understanding attitudes driving stigma, its impact on care-seeking and treatment adherence, and intervention models to reduce stigma. We used a cross-sectional qualitative study design. We administered three open-ended qualitative questions to 140 adults newly diagnosed with cancer in Moshi, Tanzania. The questions explored common attitudes toward people with cancer, the perceived impact of cancer-related stigma on care engagement, and ideas for reducing cancer stigma. Patients were recruited during routine appointments at the Cancer Center at Kilimanjaro Christian Medical Center. Data were analyzed using a team-based, applied thematic approach and NVivo 12 software. All participants described stigma as a significant challenge for treatment and receiving support from their social networks. Perceptions of financial burden, misconceptions about cancer, such as the belief that it is contagious, and fear of death, were common attitudes driving cancer stigma. Most participants feared that symptoms would prevent them from being able to work and that the cost of cancer care would drive away loved ones. Stigma was not a ubiquitous response, as some participants reported increased care and social support from family members after a cancer diagnosis. Experiences of stigma contributed to feelings of shame, fear of burdening the family, reduced resources to access treatment, and disengagement from care. Common substitutes to medical therapies included religious interventions and traditional medicine, perceived as less expensive and less stigmatizing. Many participants felt they would benefit from improved financial support, professional counseling, and education for families and communities to reduce stigmatizing attitudes and enhance social support. There is a need for intervention studies focused on improving cancer literacy, community advocacy to reduce cancer stigma, and increasing emotional and practical support for people with cancer and their families. There is also a clear need for policy efforts to make cancer care more affordable and accessible to reduce the financial burden on patients and families.

摘要

癌症污名是寻求治疗的一个关键障碍,导致全球范围内就诊延迟和癌症治疗效果不佳。坦桑尼亚的癌症负担正在上升,癌症是该国第三大死因。尽管癌症发病率上升且治疗效果不佳,但与癌症相关的污名干预措施却未得到足够重视。有必要开展深入研究,重点了解导致污名的态度、其对寻求治疗和治疗依从性的影响,以及减少污名的干预模式。我们采用了横断面定性研究设计。我们向坦桑尼亚莫希市140名新诊断出癌症的成年人提出了三个开放式定性问题。这些问题探讨了对癌症患者的常见态度、癌症相关污名对就医的感知影响,以及减少癌症污名的想法。患者是在乞力马扎罗基督教医疗中心癌症中心的常规预约期间招募的。数据采用基于团队的应用主题方法和NVivo 12软件进行分析。所有参与者都将污名描述为治疗以及从社交网络获得支持的重大挑战。对经济负担的看法、对癌症的误解(如认为癌症具有传染性)以及对死亡的恐惧,是导致癌症污名的常见态度。大多数参与者担心症状会使他们无法工作,且癌症治疗费用会使亲人远离。污名并非普遍存在的反应,因为一些参与者报告称,癌症诊断后家人给予了更多关怀和社会支持。污名经历导致了羞耻感、担心给家庭带来负担、获得治疗的资源减少以及放弃治疗。医疗疗法的常见替代方法包括宗教干预和传统医学,这些被认为成本较低且污名较小。许多参与者认为,改善经济支持、提供专业咨询以及对家庭和社区进行教育,以减少污名化态度并增强社会支持,会对他们有益。有必要开展干预研究,重点是提高癌症知识水平、进行社区宣传以减少癌症污名,以及为癌症患者及其家庭增加情感和实际支持。显然还需要通过政策努力使癌症治疗更经济实惠且可及,以减轻患者和家庭的经济负担。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/9f36/11168623/88a332322e0a/pgph.0003283.g001.jpg

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