Universität zu Köln

Zinkevich, Anna, Lubasch, Johanna Sophie, Uthoff, Sarah Anna Katharina, Boenisch, Jens, Sachse, Stefanie Kalen, Bernasconi, Tobias and Ansmann, Lena (2021). Caregiver burden and proxy-reported outcomes of people without natural speech: a cross-sectional survey study. BMJ Open, 11 (8). LONDON: BMJ PUBLISHING GROUP. ISSN 2044-6055

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Abstract

Objective To examine interrelations between care-related burden on informal caregivers and their proxy assessments of outcomes in people without natural speech. Design A cross-sectional survey. Setting Data were collected in January 2019 from a postal survey of informal caregivers of people without natural speech who are insured by a large regional health insurance company in the German federal state of Lower Saxony. Participants n=714 informal caregivers of people without natural speech of all ages and with various underlying disabilities were identified and contacted via the health insurance company. Data from n=165 informal caregivers (26.4%) were obtained. Main outcome measures Caregiver burden (self-reported, Burden Scale for Family Caregivers), pragmatic communication skills of people without natural speech (proxy report, self-developed), health-related quality of life of people without natural speech (proxy report, DISABKIDS Chronic Generic Measure - DCGM-12) and functioning of people without natural speech (proxy report, WHO Disability Assessment Schedule 2.0). Results The analyses revealed significant associations between caregiver burden on the one hand and both proxy-reported health-related quality of life (b=-0.422; p <= 0.001) and functioning (b=0.521; p <= 0.001) on the other. Adding caregiver burden to the regression model leads to a substantial increase in explained variance in functioning (R-2 Model 1=0.349; R-2 Model 2=0.575) as well as in health-related quality of life (R-2 Model 1=0.292; R-2 Model 2=0.460). Conclusions Caregiver burden should be considered an important determinant when informal caregivers report outcomes on behalf of people without natural speech. Longitudinal studies are recommended to better understand the burdens experienced by caregivers when supporting people without natural speech.

Item Type:	Journal Article
Creators:	Creators Email ORCID ORCID Put Code Zinkevich, Anna UNSPECIFIED UNSPECIFIED UNSPECIFIED Lubasch, Johanna Sophie UNSPECIFIED UNSPECIFIED UNSPECIFIED Uthoff, Sarah Anna Katharina UNSPECIFIED UNSPECIFIED UNSPECIFIED Boenisch, Jens UNSPECIFIED UNSPECIFIED UNSPECIFIED Sachse, Stefanie Kalen UNSPECIFIED UNSPECIFIED UNSPECIFIED Bernasconi, Tobias UNSPECIFIED UNSPECIFIED UNSPECIFIED Ansmann, Lena UNSPECIFIED UNSPECIFIED UNSPECIFIED
URN:	urn:nbn:de:hbz:38-571220
DOI:	10.1136/bmjopen-2021-048789
Journal or Publication Title:	BMJ Open
Volume:	11
Number:	8
Date:	2021
Publisher:	BMJ PUBLISHING GROUP
Place of Publication:	LONDON
ISSN:	2044-6055
Language:	English
Faculty:	Unspecified
Divisions:	Unspecified
Subjects:	no entry
Uncontrolled Keywords:	Keywords Language QUALITY-OF-LIFE; AMYOTROPHIC-LATERAL-SCLEROSIS; ALTERNATIVE COMMUNICATION; CHILDREN; AAC; STROKE; HEALTH; PERCEPTIONS; PARENTS; VOICE Multiple languages Medicine, General & Internal Multiple languages
URI:	http://kups.ub.uni-koeln.de/id/eprint/57122