Parental understanding of relapsing idiopathic nephrotic syndrome-Where are the knowledge gaps?

Area of Science:

• Pediatric Nephrology
• Clinical Pediatrics
• Patient Education

Background:

• Idiopathic nephrotic syndrome (INS) is a complex kidney disorder requiring significant parental involvement in management.
• Effective patient education is crucial for optimizing outcomes and reducing the burden of chronic illness.

Purpose of the Study:

• To evaluate parental comprehension of idiopathic nephrotic syndrome (INS) and its treatment protocols.
• To identify specific areas where educational deficits exist among parents managing INS in children.

Main Methods:

• A qualitative study involving interviews with 21 parents of children experiencing recurrent idiopathic nephrotic syndrome (INS).
• Interviews utilized a structured template covering disease understanding, management practices, and information access.
• Data analysis focused on identifying common trends, parental self-reported knowledge, and observed management behaviors.

Main Results:

• While 90% of parents believed they understood INS, only 29% could define relapse and 24% identify potential complications.
• Parental management of INS was generally effective, with high rates of urine testing (81%) and relapse management (90%).
• Many parents (57%) imposed unnecessary dietary restrictions during remission, and 90% sought information online, desiring further resources in print, online, and face-to-face formats.

Conclusions:

• Parents tend to overestimate their understanding of idiopathic nephrotic syndrome (INS), highlighting a gap between perceived and actual knowledge.
• Despite knowledge gaps, parental management of INS is often proficient, indicating a need for tailored educational interventions.
• There is a significant demand for enhanced information and support resources for families managing childhood INS, delivered through diverse channels.