Adaptation experienced by families from diagnosis to treatment of the child's chronic condition

Abstract

Objective: To know the adaptation process experienced by families from diagnosis to treatment of the child’s chronic condition. Material and method: This was a multicenter, qualitative study. Data presented refer to the collection carried out in the municipality of Pelotas, state of Rio Grande do Sul, in 2019. Participants were fifteen family members/caregivers of children with chronic conditions admitted to pediatric units in hospitals. Semi-structured interviews were applied and the information was analyzed through thematic analysis and interpreted using the theoretical framework: The Nursing Theory – Roy’s adaptation model. Results: The group of participants was composed of ten mothers, three fathers and two grandmothers. Family members follow a trajectory in search of the child’s diagnosis, facing difficulties in this experience, such as the impact of the diagnosis, risks, and repercussions of the disease, as well as the lack of information and ineffective communication between professionals and family members, in addition to difficulties in moving to the treatment site. Final considerations: It is necessary to critically reflect on the approach to families of children with chronic conditions, aiming at identifying the situations of vulnerability faced so that professionals can serve them, striving for comprehensive care based on their demands. Furthermore, it is essential to adopt effective communication, improving the work process to stimulate dialogue and understanding with families about the diagnosis, risks, treatment, and consequences of the child’s chronic disease.