‘We should be in this…’: telling the story of the Missing Piece study

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.