School of Public Health and Tropical Medicine, Tulane University , New Orleans , LA , USA.
Universidad Peruana Cayetano Heredia , Lima , Perú.
Disabil Rehabil. 2019 Oct;41(21):2538-2547. doi: 10.1080/09638288.2018.1471741. Epub 2018 Jun 17.
More than one billion people worldwide live with a disability. Despite advances in recognising inequalities experienced by people with disabilities, barriers to services and stigmatisation still exist. The aims of this study were to explore: (1) perceptions and experiences of services specifically available to people with disabilities and their caregivers and (2) the perception of disability. In-depth interviews were conducted with 20 caregivers of persons with a disability and 14 key informants in two cities in Peru; Lima and Iquitos. The social-ecological model was used as a framework to analyse and present data, stratifying the key barriers and opportunities at each level. At the individual level, interviewees reported a lack of support at the time of diagnosis, poor coping strategies, and communicated their desire for, and willingness to participate in support groups if they were established. On the community level, education and awareness were reportedly lacking and acts of discrimination and stigmatisation were common. Participants described opportunities for community-level campaigns to increase exposure and awareness of disability rights and inclusion. A dissatisfaction with government programmes was reported, as services were not available to everyone, in part due to geographical and socio-economic barriers. The main findings were the lack of emotional, informational, and tangible support available to caregivers of people with disabilities, often exacerbated by lower socio-economic status; a lack of transparency of care pathways available to people with disabilities; and a lack of visibility of people with disability in both Lima and Iquitos. Implications for Rehabilitation Support groups could offer additional support to caregivers of people with disabilities in Lima, mitigating existing gaps in services for people with disabilities, and their families. Education campaigns implemented on a community level could start to curb discrimination and stigmatisation of people with disabilities in Lima and Iquitos. A national census with inclusive language and methodology specifically designed to capture the percentage of the population currently living with a disability would give a real indication of what services are needed in Peru. The provision of clear, publically available routes of attention would assist caregivers and families to access services for people with disabilities.
全世界有超过 10 亿人患有残疾。尽管在认识残疾人所经历的不平等方面取得了进展，但服务障碍和污名化仍然存在。本研究的目的是探讨：(1)专门为残疾人和他们的照顾者提供的服务的看法和经验，以及(2)对残疾的看法。在秘鲁的两个城市利马和伊基托斯，对 20 名残疾人和 14 名关键信息提供者进行了深入访谈；在秘鲁的两个城市利马和伊基托斯，对 20 名残疾人和 14 名关键信息提供者进行了深入访谈；在秘鲁的两个城市利马和伊基托斯，对 20 名残疾人和 14 名关键信息提供者进行了深入访谈。采用社会生态学模型作为分析和呈现数据的框架，对每个层面的主要障碍和机会进行分层。在个人层面上，受访者报告说，在诊断时缺乏支持，应对策略不佳，并表示愿意，如果建立了支持小组，他们愿意参加支持小组。在社区层面上，据报道，缺乏教育和意识，歧视和污名化的行为很常见。参与者描述了在社区层面开展宣传活动的机会，以提高对残疾权利和包容的认识和意识。报告称对政府方案不满意，因为服务不是每个人都能享有的，部分原因是地理和社会经济障碍。主要发现是残疾照顾者缺乏情感、信息和有形支持，这往往因社会经济地位较低而加剧；残疾者可用的护理途径缺乏透明度；利马和伊基托斯都缺乏残疾人士的可见度。对康复的启示支持小组可以为利马的残疾人士照顾者提供额外的支持，弥补残疾人士及其家庭现有服务的差距。在社区层面实施的教育宣传活动可以开始遏制利马和伊基托斯对残疾人士的歧视和污名化。进行一次全国性的人口普查，使用包容性语言和专门设计的方法来明确捕捉目前有多少人口患有残疾，将真实地反映秘鲁需要什么样的服务。提供明确的、公开的服务途径将有助于照顾者和家庭为残疾人士获得服务。
