Barriers and Facilitators to Accessing Healthcare for People With Parkinson's Disease in Latin America: A Qualitative Study.

AIMS

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.

METHODS

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.

FINDINGS

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.

CONCLUSION

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.

PATIENT OR PUBLIC CONTRIBUTION

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.