Peer-reviewed article
‘We should be in this…’: telling the story of the Missing Piece study
Kassandra Fernando, Ann Grand, Heather J. Bray, Rebecca Dalton, Bernadette Wong et al. ·
Summary
Written by AI, not yet AICS's view · claude-sonnet-5-5The Missing Piece study tracked Strep A infections, such as skin sores and sore throat, in children aged 5-15 in two towns in the Kimberley region of Western Australia. This region has high rates of acute rheumatic fever and rheumatic heart disease. After the study ended, the research team wanted to share the results with the communities, especially the children who gave their time and samples. They used participatory action research to co-create two storybooks about the study. Children's voices and preferences were built into the final communication tool.
Key points
- The Missing Piece Surveillance study was school-based and took place in Broome and Derby in the Kimberley region of Western Australia.
- The Kimberley has higher rates of acute rheumatic fever and rheumatic heart disease, which can result from Strep A infection.
- The surveillance needed several years of collaboration with children, families, teachers and schools.
- Two storybooks were co-created through consultation, focus groups and reflection.
- Children's voices and preferences were incorporated into the storybooks, reflecting participatory action methodology and co-creation.
Limitations
The abstract does not report the surveillance findings, the number of participants, or how the storybooks were received by children and communities. It does not show whether the storybooks improved understanding or health outcomes.
Abstract
Introduction The Missing Piece Surveillance study was a school-based surveillance study documenting group A Streptococcus (Strep A) infection in children in two towns of the Kimberley region of Western Australia (Broome and Derby). The Kimberley experiences higher rates of the serious immune-mediated conditions acute rheumatic fever (ARF) and rheumatic heart disease (RHD), which can result from Strep A infection. The clinical epidemiological study aimed to document the prevalence and features of superficial Strep A infections, particularly impetigo (skin sores) and pharyngitis (sore throat) in children aged 5-15. Surveillance required several years of collaboration with participants, their families, their teachers and their schools to support primary data collection. Methods Following the completion of surveillance, the research team aimed to find a way to share their findings with the communities they worked with, particularly with the children who has provided their time and biological samples. In this study, we describe the use and value of participatory action research methods to co-create two storybooks telling the stories of the Missing Piece study. Results Through consultation, focus groups and reflection, we explored how the design, content and use of storybooks could create meaning for participants. Discussion Resultingly, children's voices and preferences were incorporated into the communication tool, producing an outcome that reflected participatory action methodology and co-creation.