Institutional Relations, Casa Hunter, São Paulo, Brazil.
Nursing Faculty, Universidad Nacional de Colombia, Bogotá, Colombia.
Front Public Health. 2023 Mar 2;11:1127713. doi: 10.3389/fpubh.2023.1127713. eCollection 2023.
In Latin America (LA), 40-50 million people live with rare diseases (RDs) that require constant monitoring, care, and attention. Caregivers help them with their basic life activities and medication administration, which they would otherwise be unable to perform. Family caregivers complement healthcare and social security systems; however, their unpaid work is often underappreciated and under-protected. Recognizing the need to address these unrecognized and undervalued women, the Americas Health Foundation (AHF) convened a panel of LA experts on caregiving for people with RDs to provide recommendations to support the undervalued family caregivers. A panel of LA experts in caregiving for RDs were given questions to address the challenges faced by family caregivers of people with RDs in LA. During a 3-day conference, the panelists' responses were discussed and edited until the panel agreed on recommendations to address the challenges. The identified challenges for caregivers included physical, emotional, and economical areas. Caregivers, primarily women, experienced physical pain, and social isolation, and were forced to pay substantial out-of-pocket expenses in their caregiving roles. Brazil and Colombia are at the forefront of policies to protect caregivers and their experiences in attempting to provide for this group are outlined as case studies for what is possible in LA. Finally, recognizing that caregivers must be included in formulating, executing, and evaluating care policies for people living with RDs and that the caregivers themselves require social assurances, the panel suggested policy objectives aimed at protecting caregivers of people living with RDs. The recommendations ranged from recognizing the role of the family caregiver as an essential supplement to the formal healthcare system to providing financial assistance, training, and workplace protection, among others. Finally, monitoring and evaluating the impact of policies is necessary to ensure that LA is moving forward in caring for family caregivers for people with RDs.
在拉丁美洲（LA），有 4000 万至 5000 万人患有需要持续监测、护理和关注的罕见病（RDs）。护理人员帮助他们进行基本的生活活动和药物管理，否则他们将无法完成这些活动。家庭护理人员补充了医疗保健和社会保障系统；然而，他们的无偿工作往往得不到充分的重视和保护。为了解决这些未被认识和低估的妇女的问题，美洲健康基金会（AHF）召集了一组拉丁美洲 RD 患者护理专家，提出建议，以支持被低估的家庭护理人员。一组拉丁美洲 RD 患者护理专家收到了一些问题，以解决 LA 中 RD 患者家庭护理人员所面临的挑战。在为期 3 天的会议期间，讨论并编辑了小组成员的回应，直到小组成员就解决这些挑战的建议达成一致。确定的护理人员挑战包括身体、情感和经济领域。护理人员（主要是女性）经历了身体上的痛苦和社会孤立，并且在护理角色中被迫支付大量自付费用。巴西和哥伦比亚在保护护理人员的政策方面处于领先地位，概述了它们在努力为这一群体提供服务方面的经验，作为 LA 中可能的政策的案例研究。最后，认识到必须让护理人员参与制定、执行和评估 RD 患者的护理政策，并且护理人员本身需要社会保障，该小组建议了旨在保护 RD 患者护理人员的政策目标。建议范围从承认家庭护理人员作为正式医疗保健系统的重要补充，到提供经济援助、培训和工作场所保护等。最后，需要监测和评估政策的影响，以确保 LA 在照顾 RD 患者的家庭护理人员方面取得进展。
