Adolescents with cystic fibrosis photographing their transition to adulthood: changing the gaze to change practices through participatory research

During the transition to adulthood, adolescents face the challenge of developing their
identity under the threat of being socially assigned to the role of a sick person. There is a
lack of knowledge about interventions that promote the self-determination of
adolescents' identities. We conduct participatory research to develop, implement and
evaluate a new peer-support program aimed at supporting the transition from pediatrics
to adult care for adolescents living with cystic fibrosis within two hospital centers in
France. Longitudinal qualitative research was conducted over a one-year period from
April 2022 to August 2023. We used the photovoice technique to facilitate the narration
of adolescents, who photographed and recounted what "becoming an adult" means to
them. With the adolescents, we decided to organize a photo exhibit that aims to show
the subjective experience of the transition to adulthood of adolescents living with cystic
fibrosis to support adolescents' agentivity on the narratives about the transition. We
discuss the theoretical frameworks and ways of implementing a photo exhibit as a lever
for changing practices through participatory research, where dominant discourses can
reign implicitly, hindering the empowerment of those involved.