Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2017 Jan 1;32(suppl_1):i98-i105.
doi: 10.1093/ndt/gfw344.

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

Heather Beanlands  1 , Maria Maione  1 , Caroline Poulton  2 , Emily Herreshoff  3 , Michelle A Hladunewich  4 , Marilyn Hailperin  5 , Mary Margaret Modes  6 , Lawrence An  3 , Julie Wright Nunes  7 , Howard Trachtman  8 , Patrick Nachman  2 , Debbie S Gipson  3
Affiliations

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

Heather Beanlands et al. Nephrol Dial Transplant. .

Abstract

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.

Keywords: focus groups; interviews; learning needs; nephrotic syndrome; qualitative approaches.

PubMed Disclaimer

Figures

FIGURE 1:
FIGURE 1:
Learning about NS: common learning needs.
See this image and copyright information in PMC

References

    1. Gipson DS, Trachtman H, Kaskel FJ, et al. Clinical trials treating focal segmental glomerulosclerosis should measure patient quality of life. Kidney Int 2011; 79: 678–685. - PMC - PubMed
    1. Liborio AB, Santos JP, Minete NF, et al. Proteinuria is associated with quality of life and depression in adults with primary glomerulopathy and preserved renal function. PLoS One 2012; 7: e37763. - PMC - PubMed
    1. Tong A, Sainsbury P, Chadban S, et al. Patients’ experiences and perspectives of living with CKD. Am J Kidney Dis 2009; 53: 689–700 - PubMed
    1. Costantini L, Beanlands H, McCay E, et al. The self-management experience of people with mild to moderate chronic kidney disease. Nephrol Nurs J 2008; 35: 147–155 - PubMed
    1. Sakraida T, Robinson M. Health literacy self-management and by patients with type II diabetes and stage 3 chronic kidney disease. West J Nurs Res 2009; 31: 627–647 - PubMed