Department of Health Services Research, Carl von Ossietzky University of Oldenburg, Oldenburg, Germany
Department of Health Services Research, Carl von Ossietzky University of Oldenburg, Oldenburg, Germany.
BMJ Open. 2021 Aug 17;11(8):e048789. doi: 10.1136/bmjopen-2021-048789.
To examine interrelations between care-related burden on informal caregivers and their proxy assessments of outcomes in people without natural speech.
A cross-sectional survey.
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.
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.
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).
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 (R² Model 1=0.349; R² Model 2=0.575) as well as in health-related quality of life (R² Model 1=0.292; R² Model 2=0.460).
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.
DRKS00013628.
考察非言语人群的照料者负担与其照料者对非言语人群结局的代理评估之间的相互关系。
横断面调查。
2019 年 1 月，在德国下萨克森州一家大型地区健康保险公司的参保人群中，通过邮寄问卷的方式，对所有年龄段、存在各种基础残疾的非言语人群的非正式照料者进行了数据收集。
通过健康保险公司，确定并联系了 714 名非言语人群的非正式照料者，其中有 165 名（26.4%）提供了数据。
照料者负担（自我报告，家庭照料者负担量表）、非言语人群的实用沟通技能（代理报告，自行开发）、非言语人群的健康相关生活质量（代理报告，儿童残疾核心量表-12 项，DISABKIDS Chronic Generic Measure-12）和非言语人群的功能（代理报告，世界卫生组织残疾评估量表 2.0）。
分析结果显示，照料者负担与代理报告的健康相关生活质量（b=-0.422；p≤0.001）和功能（b=0.521；p≤0.001）之间存在显著关联。将照料者负担纳入回归模型后，功能（模型 1 R²=0.349；模型 2 R²=0.575）和健康相关生活质量（模型 1 R²=0.292；模型 2 R²=0.460）的解释方差显著增加。
当非正式照料者代表非言语人群报告结局时，照料者负担应被视为一个重要的决定因素。建议进行纵向研究，以更好地理解照料者在支持非言语人群时所承受的负担。
DRKS00013628。
