Photovoice, Finalist of the WHO Health For All Film Festival

During the last 20 years, Central America has seen a dramatic increase of chronic kidney disease, unexplained by conventional risk factors, which primarily affects male workers in the agricultural sector. Similar increases are also reported from Sri Lanka, India and a few other countries with a subtropical or tropical climate. Among the plausible causes are the use of nephrotoxic agrichemicals or the exposure to high temperatures at work in the context of a climate change scenario.

Central America has seen a dramatic increase of chronic kidney disease, unexplained by conventional risk factors, which primarily affects male workers in the agricultural sector. Among the causes, the use of agrichemicals or the exposure to high temperatures

Research aiming at understanding this enigmatic disease and identifying etiology and preventive measures has been ongoing and exponentially increased during the past decade. However, efforts to understand the social determinants of wellbeing and quality of life, as well as issues around health care access, are also equally important, since this disease means for many of those affected a death sentence at a very young age and has an important socioeconomic impact in their families and communities.

Photovoice project, Nicaragua. Author: Diana Ulloa.

Photovoice: the voice of those affected by Mesoamerican Nephropathy is a documentary filmed in the first trimester of 2020 ­–just before the COVID-19 pandemic hit hard– in Nicaragua based on a research project. This video aims to raise visibility and awareness about this disease and its affected patients by them being able to tell their story from their point of view, reclaim a more fair and equal access to health care and social protection measures, as well as health promotion and preventive actions within their communities.

Photovoice: the voice of those affected by Mesoamerican Nephropathy, finalist of the WHO Health for All film festival. WHO invites to contribute by writing comments or questions on the Youtube comments section.

This project is led by ISGlobal researchers (Oriana Ramíez –myself– and Cristina O’Callaghan) and funded by Fundación Renal Íñigo Álvarez de Toledo (FRIAT). It counts with the valuable participation of several local and international institutions such as CISTA/UNAN-Leon (Nicaragua), with wide experience on environmental and occupational health in the region and whose Ethical Committee/IRB approved the research project; Boston University of Public Health (USA), who owned the field work and recruited participants from their ongoing projects in the area; and Universidad Alcalá de Henares (Spain), whose co-investigators contributed with their experience with a previous Photovoice project in deprived neighborhoods of Madrid, plus provided training on this methodology (and even lend the cameras for the field work).

Photovoice: the voice of those affected by Mesoamerican Nephropathy is a documentary filmed in the first trimester of 2020 in Nicaragua. Led by ISGlobal researchers, the project is based on a research project.

Photovoice has been selected among 1,200 entries for the 2nd edition of the WHO Film Festival, together with other 14 videos in the “Better Health and Well'' category. WHO staff from all over the world participated in this preselection and the film festival jury will nominate a winner in each category for a Grand Prix, including a trophy and a grant encouraging the production of more films about health.

Photovoice project, Nicaragua. Author: Diana Ulloa.

WHO is inviting all of us to contribute until 10 May 2021 to post comments or questions in the comment section of those videos through their Youtube links. Please, if you are reading these lines, share your research or reflections regarding the importance of the socio-economic context, occupational and environmental exposures, clinical features or access to treatment of those affected by Mesoamerican Nephropathy or more generally Chronic Kidney Disease of unknown causes. Lets contribute to raise awareness about this situation! Some of these questions will be asked to jurors and/or winners during the awards ceremonies to be streamed on WHO's Youtube channel on 13 May 2021.

Photovoice has been selected among 1,200 entries for the 2nd edition of the WHO Film Festival. WHO is inviting all of us to contribute posting comments or questions in the comment section of those videos

A participatory research-action project

Photovoice is a participatory-action methodology based on the magic of photographs and story-telling. This project puts the affected people and their communities at the center, aiming to raise their voices and experiences so this mysterious disease receives more attention from the international global health community.

Photovoice project, Nicaragua. Author: Diana Ulloa.

During the discussion groups, the photographs taken by the participants and the stories associated to them, gather around four main concerns:

1. Very low access to advanced care for their disease (drug therapies, dialysis or kidney transplant).
2. Extremely low economic resources (due to the lack of sick leaves or social protection options once their loose their job), and being unable to cope with the disease including access to food, drinking water, and housing.
3. Issues around stigma and the family burden, including caregivers' wellbeing and mental health.
4. The lack of community resources and actions.

This video is just one outcome of the project, along with a peer-reviewed manuscript with the main results (to be published) and a photobook containing participants’ photographs (stay tuned for its release in the next weeks!)

Photovoice is a participatory-action methodology based on the magic of photographs and story-telling. This project puts the affected people and their communities at the center.

Photovoice project, Nicaragua. Author: Diana Ulloa.

Film Datasheet

• Dr. Oriana Ramirez-Rubio (ISGlobal) is the principal investigator, director and producer of the film.
• Diana Ulloa is the Nicaraguan co-director, video film-maker and main editor of the film, and Javier Clavero is co-editor of the film.
• Co-investigators: Cristina O’Callaghan-Gordo, and Francisco Javier Sancho (ISGlobal), Juan José Amador, Madeleine Scammell, and Alda Gabriela Amador (Boston University), Marvin González-Quiroz, and Arlen Soto (CISTA/UNAN-León), Paloma Conde Espejo (Universidad Alcalá de Henares).
• And project participants and their families in La Paz Centro: Adrián Padilla Reyes, José Linarte Ramírez, Juan Morán Vargas, Manuel Méndez Guerrero, Iván Montano Roa, Lester Sáenz Ríos, Manuel Téllez Martínez, Marcial Herrera Mendoza, Lucio Valle Moya, Pablo Chavarría Zapata (R.I.P); and in Chichigalpa: José Rodríguez Castro, Vicente Espinales Guevara, Lucas Rivera Videa, Ezequiel Ramírez Salgado, Casiano Cárdenas Saavedra, Marlon Salgado García, Pablo Cerda Urbina, “Caballo Pata Blanca”, that appear listed in the final credits of the film.

Watch the documentary (YouTube) here