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Creating ‘Partnership in iSupport program’ to optimise family carers’ impact on dementia care: a randomised controlled trial protocol

BACKGROUND: The majority of people with dementia are cared for by their family members. However, family carers are often unprepared for their caring roles, receiving less education and support compared with professional carers. The consequences are their reduced mental and physical health and wellbe...

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Autores principales: Xiao, Lily, Yu, Ying, Ratcliffe, Julie, Milte, Rachel, Meyer, Claudia, Chapman, Michael, Chen, Langduo, Ullah, Shahid, Kitson, Alison, De Andrade, Andre Queiroz, Beattie, Elizabeth, Brodaty, Henry, McKechnie, Sue, Low, Lee-Fay, Nguyen, Tuan Anh, Whitehead, Craig, Brijnath, Bianca, Sinclair, Ronald, Voss, Diana
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9185883/
https://www.ncbi.nlm.nih.gov/pubmed/35689281
http://dx.doi.org/10.1186/s12913-022-08148-2
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author Xiao, Lily
Yu, Ying
Ratcliffe, Julie
Milte, Rachel
Meyer, Claudia
Chapman, Michael
Chen, Langduo
Ullah, Shahid
Kitson, Alison
De Andrade, Andre Queiroz
Beattie, Elizabeth
Brodaty, Henry
McKechnie, Sue
Low, Lee-Fay
Nguyen, Tuan Anh
Whitehead, Craig
Brijnath, Bianca
Sinclair, Ronald
Voss, Diana
author_facet Xiao, Lily
Yu, Ying
Ratcliffe, Julie
Milte, Rachel
Meyer, Claudia
Chapman, Michael
Chen, Langduo
Ullah, Shahid
Kitson, Alison
De Andrade, Andre Queiroz
Beattie, Elizabeth
Brodaty, Henry
McKechnie, Sue
Low, Lee-Fay
Nguyen, Tuan Anh
Whitehead, Craig
Brijnath, Bianca
Sinclair, Ronald
Voss, Diana
author_sort Xiao, Lily
collection PubMed
description BACKGROUND: The majority of people with dementia are cared for by their family members. However, family carers are often unprepared for their caring roles, receiving less education and support compared with professional carers. The consequences are their reduced mental and physical health and wellbeing, and that of care recipients. This study protocol introduces the ‘Partnership in iSupport program’ that includes five interventional components: managing transitions, managing dementia progression, psychoeducation, carer support group and feedback on services. This health services research is built on family carer and dementia care service provider partnerships. The aims of the study are to evaluate the effectiveness, cost-effectiveness and family carers’ experiences in the program. METHODS: A multicentre randomised controlled trial will be conducted with family carers of people living with dementia from two tertiary hospitals and two community aged care providers across three Australian states. The estimated sample size is 185 family carers. They will be randomly assigned to either the intervention group or the usual care group. Outcomes are measurable improvements in quality of life for carers and people with dementia, caregiving self-efficacy, social support, dementia related symptoms, and health service use for carers and their care recipients. Data will be collected at three time points: baseline, 6 months and 12 months post-initiation of the intervention. DISCUSSION: This is the first large randomised controlled trial of a complex intervention on health and social care services with carers of people living with dementia in real-world practice across hospital and community aged care settings in three Australian states to ascertain the effectiveness, cost-effectiveness and carers’ experiences of the innovative program. We expect that this study will address gaps in supporting dementia carers in health and social care systems while generating new knowledge of the mechanisms of change in the systems. Findings will strengthen proactive health management for both people living with dementia and their carers by embedding, scaling up and sustaining the ‘Partnership in iSupport program’ in the health and social care systems. TRIAL REGISTRATION: The Australian New Zealand Clinical Trials Registry (ANZCTR). ACTRN12622000199718. Registered February 4(th), 2022. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12913-022-08148-2.
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spelling pubmed-91858832022-06-11 Creating ‘Partnership in iSupport program’ to optimise family carers’ impact on dementia care: a randomised controlled trial protocol Xiao, Lily Yu, Ying Ratcliffe, Julie Milte, Rachel Meyer, Claudia Chapman, Michael Chen, Langduo Ullah, Shahid Kitson, Alison De Andrade, Andre Queiroz Beattie, Elizabeth Brodaty, Henry McKechnie, Sue Low, Lee-Fay Nguyen, Tuan Anh Whitehead, Craig Brijnath, Bianca Sinclair, Ronald Voss, Diana BMC Health Serv Res Study Protocol BACKGROUND: The majority of people with dementia are cared for by their family members. However, family carers are often unprepared for their caring roles, receiving less education and support compared with professional carers. The consequences are their reduced mental and physical health and wellbeing, and that of care recipients. This study protocol introduces the ‘Partnership in iSupport program’ that includes five interventional components: managing transitions, managing dementia progression, psychoeducation, carer support group and feedback on services. This health services research is built on family carer and dementia care service provider partnerships. The aims of the study are to evaluate the effectiveness, cost-effectiveness and family carers’ experiences in the program. METHODS: A multicentre randomised controlled trial will be conducted with family carers of people living with dementia from two tertiary hospitals and two community aged care providers across three Australian states. The estimated sample size is 185 family carers. They will be randomly assigned to either the intervention group or the usual care group. Outcomes are measurable improvements in quality of life for carers and people with dementia, caregiving self-efficacy, social support, dementia related symptoms, and health service use for carers and their care recipients. Data will be collected at three time points: baseline, 6 months and 12 months post-initiation of the intervention. DISCUSSION: This is the first large randomised controlled trial of a complex intervention on health and social care services with carers of people living with dementia in real-world practice across hospital and community aged care settings in three Australian states to ascertain the effectiveness, cost-effectiveness and carers’ experiences of the innovative program. We expect that this study will address gaps in supporting dementia carers in health and social care systems while generating new knowledge of the mechanisms of change in the systems. Findings will strengthen proactive health management for both people living with dementia and their carers by embedding, scaling up and sustaining the ‘Partnership in iSupport program’ in the health and social care systems. TRIAL REGISTRATION: The Australian New Zealand Clinical Trials Registry (ANZCTR). ACTRN12622000199718. Registered February 4(th), 2022. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12913-022-08148-2. BioMed Central 2022-06-10 /pmc/articles/PMC9185883/ /pubmed/35689281 http://dx.doi.org/10.1186/s12913-022-08148-2 Text en © The Author(s) 2022 https://creativecommons.org/licenses/by/4.0/Open AccessThis 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/) . The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/ (https://creativecommons.org/publicdomain/zero/1.0/) ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
spellingShingle Study Protocol
Xiao, Lily
Yu, Ying
Ratcliffe, Julie
Milte, Rachel
Meyer, Claudia
Chapman, Michael
Chen, Langduo
Ullah, Shahid
Kitson, Alison
De Andrade, Andre Queiroz
Beattie, Elizabeth
Brodaty, Henry
McKechnie, Sue
Low, Lee-Fay
Nguyen, Tuan Anh
Whitehead, Craig
Brijnath, Bianca
Sinclair, Ronald
Voss, Diana
Creating ‘Partnership in iSupport program’ to optimise family carers’ impact on dementia care: a randomised controlled trial protocol
title Creating ‘Partnership in iSupport program’ to optimise family carers’ impact on dementia care: a randomised controlled trial protocol
title_full Creating ‘Partnership in iSupport program’ to optimise family carers’ impact on dementia care: a randomised controlled trial protocol
title_fullStr Creating ‘Partnership in iSupport program’ to optimise family carers’ impact on dementia care: a randomised controlled trial protocol
title_full_unstemmed Creating ‘Partnership in iSupport program’ to optimise family carers’ impact on dementia care: a randomised controlled trial protocol
title_short Creating ‘Partnership in iSupport program’ to optimise family carers’ impact on dementia care: a randomised controlled trial protocol
title_sort creating ‘partnership in isupport program’ to optimise family carers’ impact on dementia care: a randomised controlled trial protocol
topic Study Protocol
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9185883/
https://www.ncbi.nlm.nih.gov/pubmed/35689281
http://dx.doi.org/10.1186/s12913-022-08148-2
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