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Development and Initial Evaluation of the Web-Based Self-Management Program “Partner in Balance” for Family Caregivers of People With Early Stage Dementia: An Exploratory Mixed-Methods Study

BACKGROUND: People with dementia increasingly depend on informal caregivers. Internet-based self-management interventions hold considerable promise for meeting the educational and support needs of early stage dementia caregivers (EDCs) at a reduced cost. OBJECTIVE: This study aimed to (1) develop an...

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Autores principales: Boots, Lizzy MM, de Vugt, Marjolein E, Withagen, Hanneke EJ, Kempen, Gertrudis IJM, Verhey, Frans RJ
Formato: Online Artículo Texto
Lenguaje:English
Publicado: JMIR Publications Inc. 2016
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4795319/
https://www.ncbi.nlm.nih.gov/pubmed/26932438
http://dx.doi.org/10.2196/resprot.5142
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author Boots, Lizzy MM
de Vugt, Marjolein E
Withagen, Hanneke EJ
Kempen, Gertrudis IJM
Verhey, Frans RJ
author_facet Boots, Lizzy MM
de Vugt, Marjolein E
Withagen, Hanneke EJ
Kempen, Gertrudis IJM
Verhey, Frans RJ
author_sort Boots, Lizzy MM
collection PubMed
description BACKGROUND: People with dementia increasingly depend on informal caregivers. Internet-based self-management interventions hold considerable promise for meeting the educational and support needs of early stage dementia caregivers (EDCs) at a reduced cost. OBJECTIVE: This study aimed to (1) develop an online self-management program for EDC to increase self-efficacy and goal attainment, and (2) evaluate the program’s feasibility and report preliminary data on effectiveness. METHODS: Based on the Medical Research Council (MRC) framework for the development and evaluation of complex interventions, a stepwise approach was adopted to explore potential user needs and develop and validate the content by means of (1) focus group discussions with dementia caregivers (N=28), (2) interviews with dementia care professionals (N=11), and (3) individual think-aloud usability tests with EDC (N=2) and experts (N=2). A pilot evaluation was conducted with EDC (N=17) to test the feasibility and establish preliminary effects. Self-report measures of feasibility were completed after the completion of intervention. Self-efficacy and goal attainment were evaluated before and after the intervention. RESULTS: The different steps provided useful information about the needs of potential users regarding the content and delivery of the program. This resulted in the newly developed “Partner in Balance” program. At the start, system failures resulted in a high noncompleter rate (7/17, 41%), but at the end, an acceptable feasibility score of 209 (range 54-234) was found. The convenience of completing the program at home, the tailored content, and the guidance (face-to-face and online) were appraised positively. Preliminary effects on caregiver self-efficacy (P<.05) and goal attainment (T>50) were promising. CONCLUSIONS: Adaptations were made to the program to limit the amount of system failures and prevent high noncompleter rates. As recommended by the MRC framework, confirming the feasibility and preliminary effectiveness is a valuable step toward examining the effectiveness of this newly developed intervention. TRIAL REGISTRATION: Dutch Trial Register (NTR): NTR4217; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=4217 (Archived by WebCite at http://www.webcitation.org/6f6B8lvRP).
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spelling pubmed-47953192016-04-07 Development and Initial Evaluation of the Web-Based Self-Management Program “Partner in Balance” for Family Caregivers of People With Early Stage Dementia: An Exploratory Mixed-Methods Study Boots, Lizzy MM de Vugt, Marjolein E Withagen, Hanneke EJ Kempen, Gertrudis IJM Verhey, Frans RJ JMIR Res Protoc Original Paper BACKGROUND: People with dementia increasingly depend on informal caregivers. Internet-based self-management interventions hold considerable promise for meeting the educational and support needs of early stage dementia caregivers (EDCs) at a reduced cost. OBJECTIVE: This study aimed to (1) develop an online self-management program for EDC to increase self-efficacy and goal attainment, and (2) evaluate the program’s feasibility and report preliminary data on effectiveness. METHODS: Based on the Medical Research Council (MRC) framework for the development and evaluation of complex interventions, a stepwise approach was adopted to explore potential user needs and develop and validate the content by means of (1) focus group discussions with dementia caregivers (N=28), (2) interviews with dementia care professionals (N=11), and (3) individual think-aloud usability tests with EDC (N=2) and experts (N=2). A pilot evaluation was conducted with EDC (N=17) to test the feasibility and establish preliminary effects. Self-report measures of feasibility were completed after the completion of intervention. Self-efficacy and goal attainment were evaluated before and after the intervention. RESULTS: The different steps provided useful information about the needs of potential users regarding the content and delivery of the program. This resulted in the newly developed “Partner in Balance” program. At the start, system failures resulted in a high noncompleter rate (7/17, 41%), but at the end, an acceptable feasibility score of 209 (range 54-234) was found. The convenience of completing the program at home, the tailored content, and the guidance (face-to-face and online) were appraised positively. Preliminary effects on caregiver self-efficacy (P<.05) and goal attainment (T>50) were promising. CONCLUSIONS: Adaptations were made to the program to limit the amount of system failures and prevent high noncompleter rates. As recommended by the MRC framework, confirming the feasibility and preliminary effectiveness is a valuable step toward examining the effectiveness of this newly developed intervention. TRIAL REGISTRATION: Dutch Trial Register (NTR): NTR4217; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=4217 (Archived by WebCite at http://www.webcitation.org/6f6B8lvRP). JMIR Publications Inc. 2016-03-01 /pmc/articles/PMC4795319/ /pubmed/26932438 http://dx.doi.org/10.2196/resprot.5142 Text en ©Lizzy MM Boots, Marjolein E de Vugt, Hanneke EJ Withagen, Gertrudis IJM Kempen, Frans RJ Verhey. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 01.03.2016. https://creativecommons.org/licenses/by/2.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0/ (https://creativecommons.org/licenses/by/2.0/) ), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Research Protocols, is properly cited. The complete bibliographic information, a link to the original publication on http://www.researchprotocols.org, as well as this copyright and license information must be included.
spellingShingle Original Paper
Boots, Lizzy MM
de Vugt, Marjolein E
Withagen, Hanneke EJ
Kempen, Gertrudis IJM
Verhey, Frans RJ
Development and Initial Evaluation of the Web-Based Self-Management Program “Partner in Balance” for Family Caregivers of People With Early Stage Dementia: An Exploratory Mixed-Methods Study
title Development and Initial Evaluation of the Web-Based Self-Management Program “Partner in Balance” for Family Caregivers of People With Early Stage Dementia: An Exploratory Mixed-Methods Study
title_full Development and Initial Evaluation of the Web-Based Self-Management Program “Partner in Balance” for Family Caregivers of People With Early Stage Dementia: An Exploratory Mixed-Methods Study
title_fullStr Development and Initial Evaluation of the Web-Based Self-Management Program “Partner in Balance” for Family Caregivers of People With Early Stage Dementia: An Exploratory Mixed-Methods Study
title_full_unstemmed Development and Initial Evaluation of the Web-Based Self-Management Program “Partner in Balance” for Family Caregivers of People With Early Stage Dementia: An Exploratory Mixed-Methods Study
title_short Development and Initial Evaluation of the Web-Based Self-Management Program “Partner in Balance” for Family Caregivers of People With Early Stage Dementia: An Exploratory Mixed-Methods Study
title_sort development and initial evaluation of the web-based self-management program “partner in balance” for family caregivers of people with early stage dementia: an exploratory mixed-methods study
topic Original Paper
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4795319/
https://www.ncbi.nlm.nih.gov/pubmed/26932438
http://dx.doi.org/10.2196/resprot.5142
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