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Is health literacy of family carers associated with carer burden, quality of life, and time spent on informal care for older persons living with dementia?

INTRODUCTION: Family carers are cornerstones in the care of older people living with dementia. Family carers report extensive carer burden, reduced health-related quality of life (HRQoL), and extensive time spent on informal care (Time). Health literacy (HL) is a concept associated with people’s abi...

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Autores principales: Häikiö, Kristin, Cloutier, Denise, Rugkåsa, Jorun
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Public Library of Science 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7678960/
https://www.ncbi.nlm.nih.gov/pubmed/33216771
http://dx.doi.org/10.1371/journal.pone.0241982
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author Häikiö, Kristin
Cloutier, Denise
Rugkåsa, Jorun
author_facet Häikiö, Kristin
Cloutier, Denise
Rugkåsa, Jorun
author_sort Häikiö, Kristin
collection PubMed
description INTRODUCTION: Family carers are cornerstones in the care of older people living with dementia. Family carers report extensive carer burden, reduced health-related quality of life (HRQoL), and extensive time spent on informal care (Time). Health literacy (HL) is a concept associated with people’s ability to access health services, and navigate the healthcare system. This study’s aim was to investigate HL among family carers, and investigate the associations between HL and carer burden, HRQoL, and Time spent on informal care. METHOD: We designed a self-administered survey comprising validated instruments, including the Health Literacy Scale (HLS-N-Q12) to measure HL, Relative Stress Scale (RSS) to measure carer burden, the EQ-5D-5L instrument to measure HRQoL, and some modified questions from the Resource Utilization in Dementia (RUD) questionnaire to measure time spent on informal care (Time). Descriptive analysis in addition to bivariate and multiple linear regressions were undertaken. In multiple linear regression analysis, we used HL as the independent variable to predict the outcomes (carer burden, HRQoL, Time). Analyses were adjusted for the effects of explanatory independent variables: age, gender, education levels, urban residency, having worked as health personnel, caring for someone with severe/mild dementia, and being born abroad. FINDINGS: In a non-probability sample of 188 family carers from across Norway, most of them female and over the age of 60, we found high levels of HL. In the bivariate analysis, carer burden and HRQoL (EQvalue) showed significant associations with HL. In the multiple regression analyses, HL was statistically significantly associated with carer burden (B = -0.18 CI:-0.33,-0.02 p = 0.02), HRQoL (EQvalue: B = 0.003 with 95% CI: 0.001, 0.006 p = 0.04), and Time (B = -0.03 with 95% CI: -0.06, 0.000, p = 0.046), after adjusting for the effect of independent variables. CONCLUSION: This is one of the first studies to investigate the associations between HL and different outcomes for family carers of older people living with dementia. Additional research into the associations identified here is needed to further develop our understanding of how to support family carers in their roles. Targeted support that increases family carers’ HL may have potential to enhance their ability to provide sustainable care over time.
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spelling pubmed-76789602020-12-02 Is health literacy of family carers associated with carer burden, quality of life, and time spent on informal care for older persons living with dementia? Häikiö, Kristin Cloutier, Denise Rugkåsa, Jorun PLoS One Research Article INTRODUCTION: Family carers are cornerstones in the care of older people living with dementia. Family carers report extensive carer burden, reduced health-related quality of life (HRQoL), and extensive time spent on informal care (Time). Health literacy (HL) is a concept associated with people’s ability to access health services, and navigate the healthcare system. This study’s aim was to investigate HL among family carers, and investigate the associations between HL and carer burden, HRQoL, and Time spent on informal care. METHOD: We designed a self-administered survey comprising validated instruments, including the Health Literacy Scale (HLS-N-Q12) to measure HL, Relative Stress Scale (RSS) to measure carer burden, the EQ-5D-5L instrument to measure HRQoL, and some modified questions from the Resource Utilization in Dementia (RUD) questionnaire to measure time spent on informal care (Time). Descriptive analysis in addition to bivariate and multiple linear regressions were undertaken. In multiple linear regression analysis, we used HL as the independent variable to predict the outcomes (carer burden, HRQoL, Time). Analyses were adjusted for the effects of explanatory independent variables: age, gender, education levels, urban residency, having worked as health personnel, caring for someone with severe/mild dementia, and being born abroad. FINDINGS: In a non-probability sample of 188 family carers from across Norway, most of them female and over the age of 60, we found high levels of HL. In the bivariate analysis, carer burden and HRQoL (EQvalue) showed significant associations with HL. In the multiple regression analyses, HL was statistically significantly associated with carer burden (B = -0.18 CI:-0.33,-0.02 p = 0.02), HRQoL (EQvalue: B = 0.003 with 95% CI: 0.001, 0.006 p = 0.04), and Time (B = -0.03 with 95% CI: -0.06, 0.000, p = 0.046), after adjusting for the effect of independent variables. CONCLUSION: This is one of the first studies to investigate the associations between HL and different outcomes for family carers of older people living with dementia. Additional research into the associations identified here is needed to further develop our understanding of how to support family carers in their roles. Targeted support that increases family carers’ HL may have potential to enhance their ability to provide sustainable care over time. Public Library of Science 2020-11-20 /pmc/articles/PMC7678960/ /pubmed/33216771 http://dx.doi.org/10.1371/journal.pone.0241982 Text en © 2020 Häikiö et al http://creativecommons.org/licenses/by/4.0/ This is an open access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/) , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
spellingShingle Research Article
Häikiö, Kristin
Cloutier, Denise
Rugkåsa, Jorun
Is health literacy of family carers associated with carer burden, quality of life, and time spent on informal care for older persons living with dementia?
title Is health literacy of family carers associated with carer burden, quality of life, and time spent on informal care for older persons living with dementia?
title_full Is health literacy of family carers associated with carer burden, quality of life, and time spent on informal care for older persons living with dementia?
title_fullStr Is health literacy of family carers associated with carer burden, quality of life, and time spent on informal care for older persons living with dementia?
title_full_unstemmed Is health literacy of family carers associated with carer burden, quality of life, and time spent on informal care for older persons living with dementia?
title_short Is health literacy of family carers associated with carer burden, quality of life, and time spent on informal care for older persons living with dementia?
title_sort is health literacy of family carers associated with carer burden, quality of life, and time spent on informal care for older persons living with dementia?
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7678960/
https://www.ncbi.nlm.nih.gov/pubmed/33216771
http://dx.doi.org/10.1371/journal.pone.0241982
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