Learning to live with nephrotic syndrome: experiences of adult patients and parents of children with nephrotic syndrome

Heather Beanlands, Maria Maione, Caroline Poulton, Emily Herreshoff, Michelle A. Hladunewich, Marilyn Hailperin, Mary Margaret Modes, Lawrence An, Julie Wright Nunes, Howard Trachtman, Patrick Nachman, Debbie S. Gipson

Research output: Contribution to journalArticlepeer-review

6 Scopus citations


Background: People living with nephrotic syndrome (NS) need to develop an in-depth understanding of their condition in order to participate in treatment decisions, develop self-management skills and integrate illness into daily life. However, the learning needs of adult patients and parents of children with NS are unknown. We therefore explored patient and parent perspectives on learning needs related to NS as part of a larger study to develop a shared learning tool for NS.

Methods: Qualitative data were collected using semistructured focus groups and individual interviews with adult patients (n = 22) and parents of children with NS (n = 25).

Results: The complexity of NS and its treatment made decision making challenging, as patients/parents often had to assimilate information about a condition that is poorly understood. Specific informational needs related to understanding the diagnosis and treatment approaches as well as learning to manage NS were identified. Difficulty in getting accurate information often made learning challenging. The importance of learning to monitor their condition, including understanding triggers that might precipitate a relapse, was highlighted, underscoring the need for individualized approaches to ensure unique learning needs are addressed.

Conclusions: Our findings reveal some of the unique concerns of people with NS given its uncertain course and the limited information available specific to NS. These results suggest the need for shared communication between the patient/parents and providers to elicit the patient's/parents' understanding of NS and to support them in meeting their unique learning needs.

Original languageEnglish (US)
Pages (from-to)i98-i105
JournalNephrology, dialysis, transplantation : official publication of the European Dialysis and Transplant Association - European Renal Association
Issue number1
StatePublished - Jan 1 2017
Externally publishedYes


  • focus groups
  • interviews
  • learning needs
  • nephrotic syndrome
  • qualitative approaches

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