Participatory Visual Methods with caregivers of children with Congenital Zika Syndrome in Colombia: A case study

Reichenberger, V. 2022. Participatory Visual Methods with caregivers of children with Congenital Zika Syndrome in Colombia: A case study. [Online]. London School of Hygiene & Tropical Medicine, London, United Kingdom. Available from: https://doi.org/10.17037/DATA.00002745.

Reichenberger, V. Participatory Visual Methods with caregivers of children with Congenital Zika Syndrome in Colombia: A case study [Internet]. London School of Hygiene & Tropical Medicine; 2022. Available from: https://doi.org/10.17037/DATA.00002745.

Reichenberger, V (2022). Participatory Visual Methods with caregivers of children with Congenital Zika Syndrome in Colombia: A case study. [Data Collection]. London School of Hygiene & Tropical Medicine, London, United Kingdom. https://doi.org/10.17037/DATA.00002745.

Description

This study explored the acceptability and feasibility of the use of two different participatory visual methods (participatory video and digital storytelling), for gathering information on the experiences and perspectives of carers of children with congenital Zika syndrome in Colombia. Participatory video was used to assess the impact of the Juntos parent-support intervention in the lives of carers, and digital storytelling was used to explore the healthcare access for these children. In-depth interviews were conducted to probe participants on their views of these methods.

Methods

Description of data capture

The Participatory Video (PV) process was conducted in Cali, Colombia in September 2019. The aim of the PV was to explore the impact of the Juntos programme on caregivers’ lives. A group of 11 Colombian caregivers of children with CZS who had taken part in the Juntos programme were approached to take part. Of the 11 caregivers contacted, eight agreed to participate in the process. Following the InsightShare27 methodology from which the facilitator did her training, a one-day workshop was led by the first author. It was held at a local NGO office where the eight caregivers attended with their children. Participants consisted of six mothers, one grandmother and one sister of children with CZS. The PV process involved a story circle, where the participants each shared their experience of the Juntos programme and how it impacted their lives. On the same day, they were taught how to film by an experienced filmmaker and facilitator. With one camera available, each caregiver took turns filming another, singing to their child. They learned how to start and stop the camera, zoom, and check the sound. They then watched each practice video to understand and identify what they would want to re-create visually for the final video. Participants jointly decided through storyboarding what would be discussed in the final video, and what footage would be shot. A collective decision was made by the participant group that two caregivers would talk while others would either film or show visually what was being said in front of the camera (e.g., how to feed their child, how to play, how to make specific props learned in Juntos). All caregivers contributed to this process. Editing was then discussed, and the facilitator edited the film according to these suggestions. The final version of the film was agreed through dialogues among the facilitator and the caregivers involved, who explained what music, texts, and effects they wanted in the film. Digital Storytelling The Digital Storytelling project was conducted online in September 2020, following the Story Center28 methodology from which the facilitator did her training. Of the eight mothers who took part in the PV process, six went on to participate in an initial online story circle which was undertaken through the Zoom platform. The Digital Stories explored the experience of healthcare access for children with disabilities in Colombia, including reported facilitators and barriers. During the story circle, participants shared their child’s story on healthcare access and identified a specific story that they would like to make a video about. They were then shown examples of Digital Stories, so they could explore how they could portray their stories visually. One week later, another session took place online where caregivers read their story and gave feedback to each other. From there, caregivers collected photos and videos to portray their story, which were sent to the facilitator (VR). Editing was completed by the facilitator, who followed closely what the participant suggested. The videos were then shared among the caregivers.

Data capture method

Other

Data Collection Period

From	To
18 September 2019	16 September 2020

Date (Date submitted to LSHTM repository)

4 February 2022

Geographical area covered (offline during plugin upgrade)

North Latitude	East Longitude	South Latitude	West Longitude
3.86137	-75.8176	2.94837	-76.7871

Language(s) of written materials

English

People & Groups

Data Creators	Reichenberger, V
LSHTM Faculty/Department	Faculty of Infectious and Tropical Diseases > Dept of Clinical Research
Participating Institutions	London School of Hygiene & Tropical Medicine, London, United Kingdom

Projects

Funders

Project	Funder	Grant Number	Funder URI
Development of an early intervention to support babies with Congenital Zika Syndrome and their families: Proposal for Support of Dissemination Phase	Wellcome Trust	212156/Z/18/Z	http://dx.doi.org/10.13039/100010269