Caregiver burden and proxy-reported outcomes of people without natural speech: a cross-sectional survey study
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 na...
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| Format: | Article |
| Language: | English |
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BMJ Publishing Group
2021-08-01
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| Series: | BMJ Open |
| Online Access: | https://bmjopen.bmj.com/content/11/8/e048789.full |
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| author | Lena Ansmann Anna Zinkevich Sarah Anna Katharina Uthoff Jens Boenisch Stefanie Kalén Sachse Tobias Bernasconi Johanna Sophie Lubasch |
| author_facet | Lena Ansmann Anna Zinkevich Sarah Anna Katharina Uthoff Jens Boenisch Stefanie Kalén Sachse Tobias Bernasconi Johanna Sophie Lubasch |
| author_sort | Lena Ansmann |
| collection | DOAJ |
| description | 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 (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).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.Trial registration number DRKS00013628. |
| format | Article |
| id | doaj-art-33e53d5bd38f4f29adc666123e50cafd |
| institution | Kabale University |
| issn | 2044-6055 |
| language | English |
| publishDate | 2021-08-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Open |
| spelling | doaj-art-33e53d5bd38f4f29adc666123e50cafd2024-12-08T05:45:08ZengBMJ Publishing GroupBMJ Open2044-60552021-08-0111810.1136/bmjopen-2021-048789Caregiver burden and proxy-reported outcomes of people without natural speech: a cross-sectional survey studyLena Ansmann0Anna Zinkevich1Sarah Anna Katharina Uthoff2Jens Boenisch3Stefanie Kalén Sachse4Tobias Bernasconi5Johanna Sophie Lubasch6Department of Organizational Health Services Research, University of Oldenburg, Oldenburg, GermanyDepartment of Health Services Research, Carl von Ossietzky University of Oldenburg, Oldenburg, GermanyDepartment of Health Services Research, Carl von Ossietzky University of Oldenburg, Oldenburg, GermanyDepartment of Special Education and Rehabilitation, University of Cologne, Cologne, GermanyDepartment of Special Education and Rehabilitation, University of Cologne, Cologne, GermanyDepartment of Special Education and Rehabilitation, University of Cologne, Cologne, GermanyOrganizational Health Services Research, School of Medicine and Health Sciences, Carl von Ossietzky University of Oldenburg, Oldenburg, GermanyObjective 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 (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).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.Trial registration number DRKS00013628.https://bmjopen.bmj.com/content/11/8/e048789.full |
| spellingShingle | Lena Ansmann Anna Zinkevich Sarah Anna Katharina Uthoff Jens Boenisch Stefanie Kalén Sachse Tobias Bernasconi Johanna Sophie Lubasch Caregiver burden and proxy-reported outcomes of people without natural speech: a cross-sectional survey study BMJ Open |
| title | Caregiver burden and proxy-reported outcomes of people without natural speech: a cross-sectional survey study |
| title_full | Caregiver burden and proxy-reported outcomes of people without natural speech: a cross-sectional survey study |
| title_fullStr | Caregiver burden and proxy-reported outcomes of people without natural speech: a cross-sectional survey study |
| title_full_unstemmed | Caregiver burden and proxy-reported outcomes of people without natural speech: a cross-sectional survey study |
| title_short | Caregiver burden and proxy-reported outcomes of people without natural speech: a cross-sectional survey study |
| title_sort | caregiver burden and proxy reported outcomes of people without natural speech a cross sectional survey study |
| url | https://bmjopen.bmj.com/content/11/8/e048789.full |
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