Department of Global and Community Health, George Mason University, Fairfax, VA.
HIVCore/Population Council, New York City, NY, USA.
Disabil Rehabil. 2020 Feb;42(3):335-348. doi: 10.1080/09638288.2018.1498138. Epub 2018 Oct 3.
Persons with disabilities have often been overlooked in the context of HIV and AIDS risk prevention and service provision. This paper explores access to and use of HIV information and services among persons with disabilities. We conducted a multi-country qualitative research study at urban and rural sites in Uganda, Zambia, and Ghana: three countries selected to exemplify different stages of the HIV response to persons with disabilities. We conducted key informant interviews with government officials and service providers, and focus group discussions with persons with disabilities and caregivers. Research methods were designed to promote active, meaningful participation from persons with disabilities, under the guidance of local stakeholder advisors. Persons with disabilities emphatically challenged the common assumption that persons with disabilities are not sexually active, pointing out that this assumption denies their rights and - by denying their circumstances - leaves them vulnerable to abuse. Among persons with disabilities, knowledge about HIV was limited and attitudes towards HIV services were frequently based upon misinformation and stigmatising cultural beliefs; associated with illiteracy especially in rural areas, and rendering people with intellectual and developmental disability especially vulnerable. Multiple overlapping layers of stigma towards persons with disabilities (including internalised self-stigma and stigma associated with gender and abuse) have compounded each other to contribute to social isolation and impediments to accessing HIV information and services. Participants suggested approaches to HIV education outreach that emphasise the importance of sharing responsibility, promoting peer leadership, and increasing the active, visible participation of persons with disabilities in intervention activities, in order to make sure that accurate information reflecting the vulnerabilities of persons with disabilities is accessible to people of all levels of education. Fundamental change to improve the skills and attitudes of healthcare providers and raise their sensitivity towards persons with disabilities (including recognising multiple layers of stigma) will be critical to the ability of HIV service organisations to implement programs that are accessible to and inclusive of persons with disabilities. We suggest practical steps towards improving HIV service accessibility and utilisation for persons with disabilities, particularly emphasising the power of community responsibility and support; including acknowledging compounded stigma, addressing attitudinal barriers, promoting participatory responses, building political will and generating high-quality evidence to drive the continuing response. HIV service providers and rehabilitation professionals alike must recognise the two-way relationship between HIV and disability, and their multiple overlapping vulnerabilities and stigmas. Persons with disabilities demand recognition through practical steps to improve HIV service accessibility and utilisation in a manner that recognises their vulnerability and facilitates retention in care and adherence to treatment. In order to promote lasting change, interventions must look beyond the service delivery context and take into account the living circumstances of individuals and communities affected by HIV and disability. Implications for RehabilitationPersons with disabilities are vulnerable to HIV infection but have historically been excluded from HIV and AIDS services, including prevention education, testing, treatment, care and support. Fundamental change is needed to address practical and attitudinal barriers to access, including provider training.Rehabilitation professionals and HIV service providers alike must acknowledge the two-way relationship between HIV and disability: people with disability are vulnerable to HIV infection; people with HIV are increasingly becoming disabled.Peer participation by persons with disabilities in the design and implementation of HIV services is crucial to increasing accessibility.Addressing political will (through the National Strategic Plan for HIV) is crucial to ensuring long-term sustainable change in recognizing and responding to the heightened vulnerability of people with disability to HIV.
残疾人在艾滋病毒和艾滋病风险预防及服务提供方面往往被忽视。本文探讨了残疾人获得和使用艾滋病毒信息和服务的情况。我们在乌干达、赞比亚和加纳的城市和农村地区进行了多国定性研究:选择这三个国家是为了说明对残疾人的艾滋病毒应对措施的不同阶段。我们与政府官员和服务提供者进行了重点介绍访谈,并与残疾人及其照顾者进行了焦点小组讨论。研究方法旨在在当地利益攸关方顾问的指导下,促进残疾人的积极、有意义的参与。残疾人强烈质疑残疾人没有性行为的普遍假设,指出这一假设剥夺了他们的权利,并通过否认他们的情况,使他们容易受到虐待。在残疾人中,对艾滋病毒的了解有限,对艾滋病毒服务的态度往往基于错误信息和污名化的文化信仰;与农村地区的文盲有关,使智力和发展障碍者特别脆弱。对残疾人的多重重叠的污名化(包括内化的自我污名化和与性别和虐待有关的污名化)相互叠加,导致他们社会孤立,难以获得艾滋病毒信息和服务。参与者提出了艾滋病毒教育外展的方法,强调了共同承担责任、促进同伴领导以及增加残疾人的积极、可见的参与干预活动的重要性,以确保各级教育水平的人都能获得反映残疾人脆弱性的准确信息。改善医疗服务提供者的技能和态度,提高他们对残疾人的敏感性(包括认识到多重污名化),对于艾滋病毒服务组织实施对残疾人具有包容性和可及性的方案至关重要。我们建议采取切实可行的步骤,改善残疾人获得和利用艾滋病毒服务的机会,特别强调社区责任和支持的力量;包括承认复合污名、解决态度障碍、促进参与性反应、建立政治意愿以及生成高质量证据,以推动持续应对。艾滋病毒服务提供者和康复专业人员都必须认识到艾滋病毒和残疾之间的双向关系,以及他们的多重重叠的脆弱性和污名化。残疾人通过改善艾滋病毒服务可及性和利用的实际步骤要求得到承认,这一过程要承认他们的脆弱性,并为他们提供在护理和治疗中保持的便利。为了促进持久的变化,干预措施必须超越服务提供的背景,考虑到受艾滋病毒和残疾影响的个人和社区的生活环境。
康复的意义
残疾人容易感染艾滋病毒,但在艾滋病毒和艾滋病服务方面,包括预防教育、检测、治疗、护理和支持方面,历来被排除在外。需要进行根本性的变革,以解决获取服务方面的实际障碍和态度障碍,包括对服务提供者的培训。
残疾人容易感染艾滋病毒;感染艾滋病毒的人越来越多地残疾。残疾人在艾滋病毒服务的设计和实施中进行同伴参与,对于提高可及性至关重要。
解决政治意愿(通过国家艾滋病毒战略计划)对于确保承认和应对残疾人对艾滋病毒的脆弱性方面的长期可持续变化至关重要。