Back to Search
Start Over
Parental understanding of relapsing idiopathic nephrotic syndrome-Where are the knowledge gaps?
- Source :
- Acta Paediatrica; Jul2020, Vol. 109 Issue 7, p1465-1472, 8p
- Publication Year :
- 2020
-
Abstract
- <bold>Aim: </bold>To assess parental understanding of idiopathic nephrotic syndrome (INS) and its management, to enable targeted education in areas of deficit.<bold>Methods: </bold>Families of children with at least one relapse of INS were interviewed, following a template covering key domains of (a) disease understanding, (b) management of INS and (c) access to information. Common trends and responses were identified and notable observations recorded.<bold>Results: </bold>Twenty-one parents were interviewed. The mean duration of INS was 4.4 years (range 0.5-14.5 years), with a mean of two steroid-sparing agents used. Although 90% parents self-reported that they understood INS, only 29% could appropriately define relapse and 24% name potential complications. The management of INS was generally good, with most parents appropriately testing urine (81%) and managing relapses (90%). Unnecessary dietary restrictions were imposed on 57% during remission. The Internet was searched by 90% of parents for disease and drug information. Further information was desired in paper form (71%), hospital website (81%) and face-to-face workshop (90%), plus educational materials for schools.<bold>Conclusion: </bold>Parents overestimated their understanding of INS; however, their management was generally well done. Parents desired more information and support in various forms. [ABSTRACT FROM AUTHOR]
Details
- Language :
- English
- ISSN :
- 08035253
- Volume :
- 109
- Issue :
- 7
- Database :
- Complementary Index
- Journal :
- Acta Paediatrica
- Publication Type :
- Academic Journal
- Accession number :
- 143852108
- Full Text :
- https://doi.org/10.1111/apa.15111