TY - JOUR
T1 - Perceived embarrassment and caregiver burden in essential tremor caregivers
AU - Kellner, Sarah
AU - Morgan, Sarah
AU - Gutierrez, Jesus
AU - Collins, Kathleen
AU - Rohl, Brittany
AU - Migliore, Fanny
AU - Cosentino, Stephanie
AU - Huey, Edward D.
AU - Louis, Elan D.
AU - Monin, Joan K.
N1 - Funding Information:
This work was supported by the National Institutes of Health : NINDS R01NS086736 . This funding body played no role in the design of the study, the collection, analysis, and interpretation of data, or the writing of the manuscript.
Publisher Copyright:
© 2017
PY - 2017/12/15
Y1 - 2017/12/15
N2 - Essential tremor (ET) is a progressive neurological disease associated with functional disability, diminished quality of life and, in some individuals, poorer balance, cognitive impairment, depression and sleep dysregulation. Individuals with ET may rely on family members and friends to act as informal caregivers to assist with daily activities and provide emotional support. There is a high prevalence of embarrassment among individuals with ET, which may be a result of the outwardly visible nature of tremor. Studies in populations with outwardly visible disability have shown that perception by caregivers of a care-recipient's social distress can contribute to caregiver burden. We hypothesize that in ET, perception by caregivers of ET participant embarrassment is a predictor for caregiver burden. Data were collected from 57 ET participants and their caregivers. We measured ET participant embarrassment using the Essential Tremor Embarrassment Assessment (ETEA), and measured perception by caregivers of ET participant embarrassment using a modified version of the ETEA. The Zarit Burden Interview was used to measure caregiver burden. Perceived embarrassment was associated with ET participant embarrassment. In linear regression models, perceived embarrassment was a stronger predictor for caregiver burden than measures of ET participant cognitive and physical impairment. The results indicate that perception of ET participant embarrassment can be burdensome for caregivers. Clinicians may wish to address patient embarrassment and perceived embarrassment to better support caregivers and ET patients.
AB - Essential tremor (ET) is a progressive neurological disease associated with functional disability, diminished quality of life and, in some individuals, poorer balance, cognitive impairment, depression and sleep dysregulation. Individuals with ET may rely on family members and friends to act as informal caregivers to assist with daily activities and provide emotional support. There is a high prevalence of embarrassment among individuals with ET, which may be a result of the outwardly visible nature of tremor. Studies in populations with outwardly visible disability have shown that perception by caregivers of a care-recipient's social distress can contribute to caregiver burden. We hypothesize that in ET, perception by caregivers of ET participant embarrassment is a predictor for caregiver burden. Data were collected from 57 ET participants and their caregivers. We measured ET participant embarrassment using the Essential Tremor Embarrassment Assessment (ETEA), and measured perception by caregivers of ET participant embarrassment using a modified version of the ETEA. The Zarit Burden Interview was used to measure caregiver burden. Perceived embarrassment was associated with ET participant embarrassment. In linear regression models, perceived embarrassment was a stronger predictor for caregiver burden than measures of ET participant cognitive and physical impairment. The results indicate that perception of ET participant embarrassment can be burdensome for caregivers. Clinicians may wish to address patient embarrassment and perceived embarrassment to better support caregivers and ET patients.
KW - Essential tremor
KW - caregiver burden
KW - clinical
KW - embarrassment
UR - http://www.scopus.com/inward/record.url?scp=85034835080&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85034835080&partnerID=8YFLogxK
U2 - 10.1016/j.jns.2017.11.020
DO - 10.1016/j.jns.2017.11.020
M3 - Article
C2 - 29246614
AN - SCOPUS:85034835080
SN - 0022-510X
VL - 383
SP - 205
EP - 210
JO - Journal of the Neurological Sciences
JF - Journal of the Neurological Sciences
ER -