How an adolescent with nephrotic syndrome sees their illness: a case report

Abstract

Introduction  Coping with a chronic illness causes changes in an adolescent's life and requires new meanings. The approach to the adolescent by the multiprofessional team requires a careful look at their childlike perspective, aiming at their engagement and empowerment in the care process.

Objective  To understand how an adolescent, diagnosed with nephrotic syndrome, understands their health condition and their care.

Method  An exploratory-descriptive qualitative methodology was used, with an interpretative approach to the phenomena based on the meanings obtained from a semi-structured interview. The empirical universe consisted of an adolescent diagnosed with nephrotic syndrome, followed at a university hospital.

Results  The following categories emerged from the patient's speech: 1) “Learning about their health condition”, which evidenced curiosity and the desire to learn more about the disease and the confidence gained to engage in treatment; 2) “The discomforts associated with the disease”, which point to the need for painful procedures, daily tests, and the modification of self-image secondary to the treatment; and 3) “Insecurity regarding the severity of the disease”, which refers to the fear of dying and of staying at home when decompensation of the disease occurs.

Conclusion  In a singular way, adolescents develop, in their own way, their conception of the disease and its treatment. The occupational therapist must explore and intervene for the acquisition of autonomy by the adolescent, their active participation, pain management, adjustments in daily activities, especially physical activity, and the redefinition of losses.

Keywords:
Child; Chronic Disease; Adolescent Health; Patient-Centered Care; Occupational Therapy