Learning to live with nephrotic syndrome: experiences of adult patients and parents of children with nephrotic syndrome
| Autor: | Heather Beanlands, Emily Herreshoff, Julie A. Wright Nunes, Lawrence An, Mary Margaret Modes, Howard Trachtman, Maria Maione, Marilyn Hailperin, Patrick H. Nachman, Michelle A. Hladunewich, Caroline J. Poulton, Debbie S. Gipson |
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| Jazyk: | angličtina |
| Rok vydání: | 2017 |
| Předmět: |
Adult
Male Parents Nephrotic Syndrome Shared learning Decision Making education 030232 urology & nephrology Qualitative property Developmental psychology 03 medical and health sciences 0302 clinical medicine Adaptation Psychological medicine Humans 030212 general & internal medicine Parent-Child Relations Child Transplantation Self-management Adult patients business.industry Communication Original Articles Professional-Patient Relations Middle Aged medicine.disease Focus group Self Care Nephrology Chronic Disease Female Treatment decision making business Nephrotic syndrome |
| DOI: | 10.17615/n1km-t249 |
| Popis: | 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. |
| Databáze: | OpenAIRE |
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