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How well do the adult social care outcomes toolkit for carers, carer experience scale and care-related quality of life capture aspects of quality of life important to informal carers in Australia?

PURPOSE: Identify aspects of quality of life (QoL) important to Australian informal carers and explore how well the Adult Social Care Outcomes Toolkit for Carers, Care-related Quality of Life instrument and Carer Experience Scale capture these aspects in the Australian context. METHODS: Online quest...

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Autores principales: Bucholc, Jessica, McCaffrey, Nikki, Ugalde, Anna, Muldowney, Anne, Rand, Stacey, Hoefman, Renske, Mihalopoulos, Cathrine, Engel, Lidia
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer International Publishing 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10522516/
https://www.ncbi.nlm.nih.gov/pubmed/37356076
http://dx.doi.org/10.1007/s11136-023-03459-1
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author Bucholc, Jessica
McCaffrey, Nikki
Ugalde, Anna
Muldowney, Anne
Rand, Stacey
Hoefman, Renske
Mihalopoulos, Cathrine
Engel, Lidia
author_facet Bucholc, Jessica
McCaffrey, Nikki
Ugalde, Anna
Muldowney, Anne
Rand, Stacey
Hoefman, Renske
Mihalopoulos, Cathrine
Engel, Lidia
author_sort Bucholc, Jessica
collection PubMed
description PURPOSE: Identify aspects of quality of life (QoL) important to Australian informal carers and explore how well the Adult Social Care Outcomes Toolkit for Carers, Care-related Quality of Life instrument and Carer Experience Scale capture these aspects in the Australian context. METHODS: Online questionnaires were completed by Australian informal carers. Socio-demographics, open-ended questions: positive/negative aspects of caring and QoL aspects missing from the instruments, and ranking of the instrument domains was used to explore the content of the instruments. Instruments were scored using preference-weighted value sets (reported in another paper). Content analysis was used to analyse the open-ended responses. Chi-squared test looked at differences in domain importance. Descriptive analyses summarised all other information. RESULTS: Eight themes were identified: Behaviour-mood of the care recipient, Caring responsibilities, Finances, Health, Own life, Perception of carers, Relationship with care recipient and Support. Many aspects of carer QoL mentioned as missing in the instruments appeared covered by the domains, of which all were reported as important. The highest ranked domain was relationship with the care recipient. The influence of the care recipient specific support, behaviour/mood and health on carer QoL appear absent in all instruments. CONCLUSION: The content of the three instruments appears relevant in an Australian setting. The influence of care recipient’s health and well-being on carer QoL should be considered, along with spillover effects. A content and/or face validity analysis is required to confirm differences in item interpretation in Australian informal carers. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s11136-023-03459-1.
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spelling pubmed-105225162023-09-28 How well do the adult social care outcomes toolkit for carers, carer experience scale and care-related quality of life capture aspects of quality of life important to informal carers in Australia? Bucholc, Jessica McCaffrey, Nikki Ugalde, Anna Muldowney, Anne Rand, Stacey Hoefman, Renske Mihalopoulos, Cathrine Engel, Lidia Qual Life Res Article PURPOSE: Identify aspects of quality of life (QoL) important to Australian informal carers and explore how well the Adult Social Care Outcomes Toolkit for Carers, Care-related Quality of Life instrument and Carer Experience Scale capture these aspects in the Australian context. METHODS: Online questionnaires were completed by Australian informal carers. Socio-demographics, open-ended questions: positive/negative aspects of caring and QoL aspects missing from the instruments, and ranking of the instrument domains was used to explore the content of the instruments. Instruments were scored using preference-weighted value sets (reported in another paper). Content analysis was used to analyse the open-ended responses. Chi-squared test looked at differences in domain importance. Descriptive analyses summarised all other information. RESULTS: Eight themes were identified: Behaviour-mood of the care recipient, Caring responsibilities, Finances, Health, Own life, Perception of carers, Relationship with care recipient and Support. Many aspects of carer QoL mentioned as missing in the instruments appeared covered by the domains, of which all were reported as important. The highest ranked domain was relationship with the care recipient. The influence of the care recipient specific support, behaviour/mood and health on carer QoL appear absent in all instruments. CONCLUSION: The content of the three instruments appears relevant in an Australian setting. The influence of care recipient’s health and well-being on carer QoL should be considered, along with spillover effects. A content and/or face validity analysis is required to confirm differences in item interpretation in Australian informal carers. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s11136-023-03459-1. Springer International Publishing 2023-06-25 2023 /pmc/articles/PMC10522516/ /pubmed/37356076 http://dx.doi.org/10.1007/s11136-023-03459-1 Text en © The Author(s) 2023 https://creativecommons.org/licenses/by/4.0/Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) .
spellingShingle Article
Bucholc, Jessica
McCaffrey, Nikki
Ugalde, Anna
Muldowney, Anne
Rand, Stacey
Hoefman, Renske
Mihalopoulos, Cathrine
Engel, Lidia
How well do the adult social care outcomes toolkit for carers, carer experience scale and care-related quality of life capture aspects of quality of life important to informal carers in Australia?
title How well do the adult social care outcomes toolkit for carers, carer experience scale and care-related quality of life capture aspects of quality of life important to informal carers in Australia?
title_full How well do the adult social care outcomes toolkit for carers, carer experience scale and care-related quality of life capture aspects of quality of life important to informal carers in Australia?
title_fullStr How well do the adult social care outcomes toolkit for carers, carer experience scale and care-related quality of life capture aspects of quality of life important to informal carers in Australia?
title_full_unstemmed How well do the adult social care outcomes toolkit for carers, carer experience scale and care-related quality of life capture aspects of quality of life important to informal carers in Australia?
title_short How well do the adult social care outcomes toolkit for carers, carer experience scale and care-related quality of life capture aspects of quality of life important to informal carers in Australia?
title_sort how well do the adult social care outcomes toolkit for carers, carer experience scale and care-related quality of life capture aspects of quality of life important to informal carers in australia?
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10522516/
https://www.ncbi.nlm.nih.gov/pubmed/37356076
http://dx.doi.org/10.1007/s11136-023-03459-1
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