Department of Occupational Therapy, University of Illinois at Chicago, 1919 W. Tailor St., Chicago, IL 60612, USA.
Department of Disability and Human Development, University of Illinois at Chicago, 1640 W. Roosevelt Rd., Chicago, IL 60612, USA.
Int J Environ Res Public Health. 2022 Mar 6;19(5):3112. doi: 10.3390/ijerph19053112.
Eliminating cancer-related disparities is a global public health priority. Approximately 40% of cancer survivors experience long-term effects of cancer which can lead to activity limitations and participation restrictions; yet discussions of disability are largely absent from clinical and research cancer health equity agendas. The purpose of this study was to explore how cancer survivors experience and make sense of the long-term disabling effects of cancer and its treatments. In this qualitative study, data were collected via in-depth semi-structured interviews with survivors of breast cancer, head and neck cancer, and sarcoma ( = 30). Data were analyzed thematically using a 2-phase iterative process proceeding from descriptive to conceptual coding. Survivors experienced a wide range of long-term physical, sensory, cognitive, and emotional effects, that intertwined to restrict their participation in self-care, work, leisure, and social roles. While the interaction between impairments and participation restrictions meets the definition of disability; participants articulated a range of responses when asked about their disability identity, including (1) rejecting, (2) othering, (3) acknowledging, and (4) affirming. Findings may be indicative of structural and internalized ableism which can impede cancer care and survivorship. To support cancer survivors' transition to post-treatment life, cancer care providers should implement anti-ableist practices and engage in frank discussions about cancer's long-term impacts.
消除与癌症相关的差异是全球公共卫生的重点。大约 40%的癌症幸存者经历癌症的长期影响，这可能导致活动受限和参与受限；然而，残疾问题在临床和研究癌症健康公平议程中基本上没有得到讨论。本研究的目的是探讨癌症幸存者如何体验和理解癌症及其治疗的长期致残影响。在这项定性研究中，通过对乳腺癌、头颈部癌症和肉瘤幸存者（=30 人）进行深入的半结构化访谈收集数据。使用描述性到概念性编码的两阶段迭代过程进行主题数据分析。幸存者经历了广泛的长期身体、感觉、认知和情绪影响，这些影响交织在一起，限制了他们参与自我护理、工作、休闲和社会角色的能力。虽然损伤与参与受限之间的相互作用符合残疾的定义；但当被问及残疾身份时，参与者表达了一系列反应，包括（1）拒绝、（2）异化、（3）承认和（4）肯定。研究结果可能表明存在结构性和内在的能力歧视，这可能会阻碍癌症的治疗和生存。为了支持癌症幸存者向治疗后生活过渡，癌症护理提供者应实施反能力歧视实践，并就癌症的长期影响进行坦诚讨论。
