Research with children and adolescents with chronic disease and their families: barriers and facilitators

Abstract

Chronic diseases represent a high cost, requiring adaptations and an efficient health system. On child health, little has been invested in the production of new knowledge. This article purposes to describe the experience of some researchers from a reference center in the care of rare diseases. Research with children and adolescentes requires a playful environment. In addition, it is necessary to understand that the protagonist of the study is the child and the adolescent. The experience of the researchers at the reference center is based on a data collection field inserted in the routine of daily and regular appointments. The waiting room is the great facilitator of the research, with library, games and music, enabling the adherence and participation of both the patient and their guardian. The researchers also use empathy when inviting children and adolescents to participate in the research and privilege the creation of bonds with patients. The child’s role in research promotes the need to adapt both the physical space and the approach, which would favor the scarcity of these studies. However, even with these singularities, research on chronic pediatric patients is important, given the relevance of these patients’ participation in the health sector budget, both in national and international settings.