The Diagnostic Journey of Childhood Idiopathic Nephrotic Syndrome: Perspectives of Children and Their Caregivers.

ABSTRACT:

Background

Childhood nephrotic syndrome is a rare kidney disease characterized by sudden onset of edema, massive proteinuria, and hypoalbuminemia. Rare diseases can have a long and difficult trajectory to diagnosis.

Objective

We aimed to explore the experiences of children with nephrotic syndrome and their caregivers in their search of a nephrotic syndrome diagnosis.

Design

An exploratory, qualitative descriptive study design.

Setting

The Alberta Children's Hospital outpatient nephrology program in Calgary, Alberta, Canada.

Sample

Children aged 9 to 18 years with steroid-sensitive nephrotic syndrome and their caregivers.

Methods

We undertook semi-structured interviews with children (alone or with a caregiver present) and their caregivers using a q

SUBMITTER: Okpere A 

PROVIDER: S-EPMC9716592 | biostudies-literature | 2022

REPOSITORIES: biostudies-literature