Research on aging during the Venezuelan humanitarian crisis: the experience of the Maracaibo aging study

Abstract Background Venezuela is in the throes of a complex humanitarian crisis that is one of the worst in decades to impact any country outside of wartime. This case analysis describes the challenges faced by the ongoing Maracaibo Aging Study (MAS) during the deteriorating conditions in Venezuela....

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Main Authors: Gladys E. Maestre, Rosa V. Pirela, Carmen L. Paz, Jesus D. Melgarejo, Luis J. Mena, Carlos A. Chavez, Reinier Leendertz, Michele Petitto, Eglé Silva, Gustavo E. Calmón, Lama Al-Aswad, Joseph H. Lee, Joseph D. Terwilliger
Format: Article
Language:English
Published: BMC 2021-03-01
Series:BMC Public Health
Subjects:
Online Access:https://doi.org/10.1186/s12889-021-10526-0
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spelling doaj-8365f0762be946e1b5eb14eeb4f438dd2021-03-11T11:15:09ZengBMCBMC Public Health1471-24582021-03-0121111010.1186/s12889-021-10526-0Research on aging during the Venezuelan humanitarian crisis: the experience of the Maracaibo aging studyGladys E. Maestre0Rosa V. Pirela1Carmen L. Paz2Jesus D. Melgarejo3Luis J. Mena4Carlos A. Chavez5Reinier Leendertz6Michele Petitto7Eglé Silva8Gustavo E. Calmón9Lama Al-Aswad10Joseph H. Lee11Joseph D. Terwilliger12Department of Neuroscience, University of Texas Rio Grande Valley School of MedicineDepartment of Human Genetics, University of Texas Rio Grande Valley School of MedicineLaboratory of Neurosciences, University of ZuliaLaboratory of Neurosciences, University of ZuliaUniversidad Politécnica de SinaloaLaboratory of Neurosciences, University of ZuliaLaboratory of Neurosciences, University of ZuliaLaboratory of Neurosciences, University of ZuliaCardiovascular Institute (IECLUZ), University of ZuliaCardiovascular Institute (IECLUZ), University of ZuliaDepartment of Ophthalmology, Grossman School of Medicine, New York UniversitySergievsky Center, College of Physicians and Surgeons, Columbia UniversitySergievsky Center, College of Physicians and Surgeons, Columbia UniversityAbstract Background Venezuela is in the throes of a complex humanitarian crisis that is one of the worst in decades to impact any country outside of wartime. This case analysis describes the challenges faced by the ongoing Maracaibo Aging Study (MAS) during the deteriorating conditions in Venezuela. When the MAS began in 1997, it focused on memory-related disorders. Since then, strategic planning and proactive community participation allowed us to anticipate and address logistical, funding, and ethical challenges, and facilitated the enrollment and retention of more than 2500 subjects over 55 years of age. All participants, who are residents of the city of Maracaibo, Venezuela, underwent various assessments on several occasions. Here, we discuss how our approach to implementing a longitudinal, population-based study of age-related conditions has allowed our research program to continue throughout this period of political, economic, and social upheaval. Discussion As the social context in Venezuela became more complicated, new challenges emerged, and strategies to sustain the study and participation were refined. We identified five main mechanisms through which the evolving humanitarian crisis has affected implementation of the MAS: 1) community dynamics; 2) morale of researchers, staff, and participants; 3) financial feasibility; 4) components of the research process; and 5) impact on the health of staff, participants, and their families. Strategies to compensate for the impact on these components were implemented, based on inputs from community members and staff. Improved communication, greater involvement of stakeholders, broadening the scope of the project, and strengthening international collaboration have been the most useful strategies. Particular demands emerged, related to the increased mortality and comorbidities of participants and staff, and deterioration of basic services and safety. Conclusion Although the MAS has faced numerous obstacles, it has been possible to continue a longitudinal research project throughout the humanitarian crisis, because our research team has engaged the community deeply and developed a sense of mutual commitment, and also because our project has provided funding to help keep researchers employed, somewhat attenuating the brain drain.https://doi.org/10.1186/s12889-021-10526-0AgingDementiaVenezuelaHumanitarian crisisResearchEthical challenges
collection DOAJ
language English
format Article
sources DOAJ
author Gladys E. Maestre
Rosa V. Pirela
Carmen L. Paz
Jesus D. Melgarejo
Luis J. Mena
Carlos A. Chavez
Reinier Leendertz
Michele Petitto
Eglé Silva
Gustavo E. Calmón
Lama Al-Aswad
Joseph H. Lee
Joseph D. Terwilliger
spellingShingle Gladys E. Maestre
Rosa V. Pirela
Carmen L. Paz
Jesus D. Melgarejo
Luis J. Mena
Carlos A. Chavez
Reinier Leendertz
Michele Petitto
Eglé Silva
Gustavo E. Calmón
Lama Al-Aswad
Joseph H. Lee
Joseph D. Terwilliger
Research on aging during the Venezuelan humanitarian crisis: the experience of the Maracaibo aging study
BMC Public Health
Aging
Dementia
Venezuela
Humanitarian crisis
Research
Ethical challenges
author_facet Gladys E. Maestre
Rosa V. Pirela
Carmen L. Paz
Jesus D. Melgarejo
Luis J. Mena
Carlos A. Chavez
Reinier Leendertz
Michele Petitto
Eglé Silva
Gustavo E. Calmón
Lama Al-Aswad
Joseph H. Lee
Joseph D. Terwilliger
author_sort Gladys E. Maestre
title Research on aging during the Venezuelan humanitarian crisis: the experience of the Maracaibo aging study
title_short Research on aging during the Venezuelan humanitarian crisis: the experience of the Maracaibo aging study
title_full Research on aging during the Venezuelan humanitarian crisis: the experience of the Maracaibo aging study
title_fullStr Research on aging during the Venezuelan humanitarian crisis: the experience of the Maracaibo aging study
title_full_unstemmed Research on aging during the Venezuelan humanitarian crisis: the experience of the Maracaibo aging study
title_sort research on aging during the venezuelan humanitarian crisis: the experience of the maracaibo aging study
publisher BMC
series BMC Public Health
issn 1471-2458
publishDate 2021-03-01
description Abstract Background Venezuela is in the throes of a complex humanitarian crisis that is one of the worst in decades to impact any country outside of wartime. This case analysis describes the challenges faced by the ongoing Maracaibo Aging Study (MAS) during the deteriorating conditions in Venezuela. When the MAS began in 1997, it focused on memory-related disorders. Since then, strategic planning and proactive community participation allowed us to anticipate and address logistical, funding, and ethical challenges, and facilitated the enrollment and retention of more than 2500 subjects over 55 years of age. All participants, who are residents of the city of Maracaibo, Venezuela, underwent various assessments on several occasions. Here, we discuss how our approach to implementing a longitudinal, population-based study of age-related conditions has allowed our research program to continue throughout this period of political, economic, and social upheaval. Discussion As the social context in Venezuela became more complicated, new challenges emerged, and strategies to sustain the study and participation were refined. We identified five main mechanisms through which the evolving humanitarian crisis has affected implementation of the MAS: 1) community dynamics; 2) morale of researchers, staff, and participants; 3) financial feasibility; 4) components of the research process; and 5) impact on the health of staff, participants, and their families. Strategies to compensate for the impact on these components were implemented, based on inputs from community members and staff. Improved communication, greater involvement of stakeholders, broadening the scope of the project, and strengthening international collaboration have been the most useful strategies. Particular demands emerged, related to the increased mortality and comorbidities of participants and staff, and deterioration of basic services and safety. Conclusion Although the MAS has faced numerous obstacles, it has been possible to continue a longitudinal research project throughout the humanitarian crisis, because our research team has engaged the community deeply and developed a sense of mutual commitment, and also because our project has provided funding to help keep researchers employed, somewhat attenuating the brain drain.
topic Aging
Dementia
Venezuela
Humanitarian crisis
Research
Ethical challenges
url https://doi.org/10.1186/s12889-021-10526-0
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