Experience of adolescents/young adults with chronic kidney disease and of their families during transition of care

Abstract

Objective To understand the experience of adolescents/young adults with chronic kidney disease and of their families during transition of care. Method: Qualitative study, based on the assumptions of the Grounded Theory and of the theoretical framework of Symbolic Interactionism. Interviews were held with eight families of adolescents/young adults diagnosed with chronic kidney disease, in the process of transition of care, followed in a public teaching hospital, during the years 2019 and 2020. Data were obtained through participant observation, semi-structured interviews, and consultations of clinical records. Results: Comparative analysis of the data allowed us to reveal the family’s experience in the process, represented by the categories “having to move on to the next phase”, in which participants describe the need to strengthen the independence of the adolescent/young adult through the change of roles within the family and “exploring the new world”, where the autonomy of the teenager/young adult must be encouraged. Conclusion: The study highlighted the importance of individualized transition plans, collaboration between family and health team, and enhancement of adolescents and young adults’ independence and self-care.