Using a Co-Creative Process to Develop Information Videos on Transition Care: Process, Outcomes, and Evaluation

The transition from pediatric to adult healthcare settings often represents a challenging and difficult period of life for youths with chronic illnesses. It represents a change of context at a time when several social, psychological, and physiological changes related to adolescence co-occur. Lack of preparation, information, coordination between pediatric and adult settings, and support were, and still are, frequently cited issues. As an interdisciplinary team of health researchers in ethics and pediatrics, we became attuned to potential value discrepancies between established transition programs – which tend to stress the value of independence and autonomy – and local social and clinical realities. The objective of better integrating youth perspectives about their own well-being and flourishing into transition program development led us to undertake a mixed-method study (e.g., interviews, surveys) and a partly participatory research project. In this paper, we report specifically on the participatory process, experience, and procedural outcomes (based on the evaluation of the experience by youths) of co-creating videos with youths. Overall, the co-creative video process was successful in producing six distinctive videos with the support of a professional videographer. The evaluation of participating youths also suggests that the experience was overwhelmingly positive, fostering a sense of belonging (breaking isolation), and empowering them as agents of information and change throughout the process. We elaborate on the benefits of co-creative participatory research based on our experience and then further discuss the realities of undertaking such a co-creative project. As a resource, the videos produced could help raise needed awareness of various aspects of transition care for youths with chronic illnesses.