Jeyachandran Christine, Spooner Catherine, Salgado Ana Margarita Rodriguez, Prina Matthew, Rhee Joel, Llibre-Guerra Jorge Jesus, Kim Dani, Llibre-Rodriguez Juan J, Harris Mark F
The International Centre for Future Health System, UNSW, Sydney, Australia.
Global Brain Health Institute, University of San Francisco, San Francisco, California, USA.
Health Expect. 2025 Aug;28(4):e70380. doi: 10.1111/hex.70380.
The aim of the study was to identify the barriers and facilitators to healthcare access for people with Parkinson's disease (PWP) in Spanish-speaking Latin American countries (LAC) in Central and South America, to understand their drivers and consider the implications for health systems in LAC.
Four online semi-structured focus groups were conducted with 25 PWP who provide education and/or support to PWP. The study was designed and implemented by a person with lived experience of PD. Data were mapped to an existing model of access to healthcare that incorporates provider and consumer abilities.
There were multiple provider barriers in terms of availability, affordability and appropriateness of care, driven by a lack of health system capacity. Doctors didn't recognise Parkinson's symptoms, which resulted in delayed diagnosis. Limited knowledge of Parkinson's and limited multidisciplinary care and medication was common across Spanish-speaking Latin America. Inequities in access were experienced by those living in rural areas and those who could not afford private care. Barriers at the person level included stigma, depression and lack of health literacy around PD. Family and peer support were facilitators of access.
Significant gaps in Parkinson's care across Latin America are driven by stigma and limited service availability. This study highlights the need for culturally tailored interventions that address stigma, promote peer support and strengthen self-management and health professional training across Spanish-speaking Latin America. We call for more global partnerships to encourage training and mentoring in regional cities across Latin America with co-designed approaches to ensure a culturally appropriate framework of care that supports patients and healthcare professionals with a focus on self-management.
The first author (C.J.) has Parkinson's disease (PD) and lived with the condition for 8 years in Peru. She was involved in all aspects of the study, including design, data collection, analysis and writing this article. C.J. is an international advocate in the PD community.
本研究旨在确定中美洲和南美洲讲西班牙语的拉丁美洲国家（LAC）帕金森病患者（PWP）获得医疗服务的障碍和促进因素，了解其驱动因素，并考虑对拉丁美洲卫生系统的影响。
对25名向帕金森病患者提供教育和/或支持的帕金森病患者进行了四次在线半结构化焦点小组访谈。该研究由一名有帕金森病生活经历的人设计和实施。数据被映射到一个现有的医疗服务获取模型，该模型纳入了提供者和消费者的能力。
由于卫生系统能力不足，在医疗服务的可及性、可负担性和适当性方面存在多个提供者障碍。医生没有识别出帕金森病症状，导致诊断延迟。在讲西班牙语的拉丁美洲，对帕金森病的了解有限、多学科护理和药物治疗有限的情况很常见。生活在农村地区和负担不起私人护理费用的人在获得医疗服务方面存在不平等现象。个人层面的障碍包括耻辱感、抑郁症以及对帕金森病的健康素养不足。家庭和同伴支持是获得医疗服务的促进因素。
拉丁美洲帕金森病护理方面的重大差距是由耻辱感和有限的服务可及性驱动的。本研究强调需要进行文化定制干预，以消除耻辱感、促进同伴支持并加强讲西班牙语的拉丁美洲的自我管理和卫生专业人员培训。我们呼吁建立更多全球伙伴关系，以鼓励在拉丁美洲各区域城市进行培训和指导，采用共同设计的方法，确保建立一个文化上适当的护理框架，以支持患者和卫生专业人员，重点是自我管理。
第一作者（C.J.）患有帕金森病（PD），在秘鲁患有该疾病8年。她参与了研究的各个方面，包括设计、数据收集、分析和撰写本文。C.J.是帕金森病社区的国际倡导者。
