title: Learning to live with nephrotic syndrome: experiences of adult patients and parents of children with nephrotic syndrome.
abstract: 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.
  
  
  
  Qualitative data were collected using semistructured focus groups and individual interviews with adult patients (n = 22) and parents of children with NS (n = 25).
  
  
  
  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.
  
  
  
  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.
authors.affiliation: Daphne Cockwell School of Nursing, Ryerson University, POD 464B, Toronto, ON, Canada.
authors.forename: Heather
authors.initials: H
authors.lastname: Beanlands
authors.affiliation: Daphne Cockwell School of Nursing, Ryerson University, POD 464B, Toronto, ON, Canada.
authors.forename: Maria
authors.initials: M
authors.lastname: Maione
authors.affiliation: Division of Nephrology, Department of Medicine, University of North Carolina, Chapel Hill, NC, USA.
authors.forename: Caroline
authors.initials: C
authors.lastname: Poulton
authors.affiliation: Department of Pediatrics, University of Michigan, Ann Arbor, MI, USA.
authors.forename: Emily
authors.initials: E
authors.lastname: Herreshoff
authors.affiliation: Division of Nephrology, Department of Medicine, Sunnybrook Health Sciences Centre, University of Toronto, Toronto, ON, Canada.
authors.forename: Michelle A
authors.initials: MA
authors.lastname: Hladunewich
authors.affiliation: NephCure Kidney International, King of Prussia, PA, USA.
authors.forename: Marilyn
authors.initials: M
authors.lastname: Hailperin
authors.affiliation: Patient Advocate, Ann Arbor, MI, USA.
authors.forename: Mary Margaret
authors.initials: MM
authors.lastname: Modes
authors.affiliation: Department of Pediatrics, University of Michigan, Ann Arbor, MI, USA.
authors.forename: Lawrence
authors.initials: L
authors.lastname: An
authors.affiliation: Division of Nephrology, Department of Medicine, University of Michigan, Ann Arbor, MI, USA.
authors.forename: Julie Wright
authors.initials: JW
authors.lastname: Nunes
authors.affiliation: Division of Nephrology, Department of Pediatrics, New York University, New York, NY, USA.
authors.forename: Howard
authors.initials: H
authors.lastname: Trachtman
authors.affiliation: Division of Nephrology, Department of Medicine, University of North Carolina, Chapel Hill, NC, USA.
authors.forename: Patrick
authors.initials: P
authors.lastname: Nachman
authors.affiliation: Department of Pediatrics, University of Michigan, Ann Arbor, MI, USA.
authors.forename: Debbie S
authors.initials: DS
authors.lastname: Gipson
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D002648:Child; D002908:Chronic Disease; D003142:Communication; D003657:Decision Making; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009404:Nephrotic Syndrome / Q000523:psychology / Q000628:therapy*; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology*; D011369:Professional-Patient Relations; D012648:Self Care
keywords: focus groups; interviews; learning needs; nephrotic syndrome; qualitative approaches