Patient and caregiver perspectives on terms used to describe kidney health
File(s)
Supplementary information
Author(s)
Type
Journal Article
Abstract
BACKGROUND AND OBJECTIVES: The language used to communicate important aspects of kidney health is inconsistent and may be conceptualized differently by patients and health professionals. These problems may impair the quality of communication, care, and patient outcomes. We aimed to describe the perspectives of patients on terms used to describe kidney health. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: Patients with CKD (n=54) and caregivers (n=13) from the United States, United Kingdom, and Australia participated in ten focus groups to discuss terms for kidney health (including kidney, renal, CKD, ESKD, kidney failure, and descriptors for kidney function). We analyzed the data using thematic analysis. RESULTS: We identified four themes: provoking and exacerbating undue trauma (fear of the unknown, denoting impending death, despair in having incurable or untreatable disease, premature labeling and assumptions, judgment, stigma, and failure of self); frustrated by ambiguity (confused by medicalized language, lacking personal relevance, baffled by imprecision in meaning, and/or opposed to obsolete terms); making sense of the prognostic enigma (conceptualizing level of kidney function, correlating with symptoms and effect on life, predicting progression, and need for intervention); and mobilizing self-management (confronting reality, enabling planning and preparation, taking ownership for change, learning medical terms for self-advocacy, and educating others). CONCLUSIONS: The obscurity and imprecision of terms in CKD can be unduly distressing and traumatizing for patients, which can impair decision making and self-management. Consistent and meaningful patient-centered terminology may improve patient autonomy, satisfaction, and outcomes.
Date Issued
2020-06-25
Date Acceptance
2020-04-16
Citation
Clinical Journal of the American Society of Nephrology, 2020, 15 (6), pp.1-15
ISSN
1555-9041
Publisher
American Society of Nephrology
Start Page
1
End Page
15
Journal / Book Title
Clinical Journal of the American Society of Nephrology
Volume
15
Issue
6
Copyright Statement
© 2020 by the American Society of Nephrology
Identifier
https://www.ncbi.nlm.nih.gov/pubmed/32586923
PII: CJN.00900120
Subjects
Australia
caregivers
chronic
chronic kidney disease
communication
decision making
education
fear
focus groups
judgment
kidney failure
language
nomenclature
ownership
patient participation
patient-centered care
personal satisfaction
prognosis
renal insufficiency
self-management
Publication Status
Published
Coverage Spatial
United States
Date Publish Online
2020-06-25