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A Web-Based Platform (CareVirtue) to Support Caregivers of People Living With Alzheimer Disease and Related Dementias: Mixed Methods Feasibility Study

BACKGROUND: People living with Alzheimer disease and related dementias (ADRD) require prolonged and complex care that is primarily managed by informal caregivers who face significant unmet needs regarding support for communicating and coordinating across their informal care network. To address this...

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Autores principales: Boutilier, Justin J, Loganathar, Priya, Linden, Anna, Scheer, Eleanore, Noejovich, Sofia, Elliott, Christian, Zuraw, Matthew, Werner, Nicole E
Formato: Online Artículo Texto
Lenguaje:English
Publicado: JMIR Publications 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9389379/
https://www.ncbi.nlm.nih.gov/pubmed/35925654
http://dx.doi.org/10.2196/36975
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author Boutilier, Justin J
Loganathar, Priya
Linden, Anna
Scheer, Eleanore
Noejovich, Sofia
Elliott, Christian
Zuraw, Matthew
Werner, Nicole E
author_facet Boutilier, Justin J
Loganathar, Priya
Linden, Anna
Scheer, Eleanore
Noejovich, Sofia
Elliott, Christian
Zuraw, Matthew
Werner, Nicole E
author_sort Boutilier, Justin J
collection PubMed
description BACKGROUND: People living with Alzheimer disease and related dementias (ADRD) require prolonged and complex care that is primarily managed by informal caregivers who face significant unmet needs regarding support for communicating and coordinating across their informal care network. To address this unmet need, we developed CareVirtue, which provides (1) the ability to invite care network members; (2) a care guide detailing the care plan; (3) a journal where care network members can document, communicate, and coordinate; (4) a shared calendar; and (5) vetted geolocated caregiver resources. OBJECTIVE: This study aims to evaluate CareVirtue’s feasibility based on: (1) Who used CareVirtue? (2) How did caregivers use CareVirtue? (3) How did caregivers perceive the acceptability of CareVirtue? (4) What factors were associated with CareVirtue use? METHODS: We conducted a feasibility study with 51 care networks over a period of 8 weeks and used a mixed methods approach that included both quantitative CareVirtue usage data and semistructured interviews. RESULTS: Care networks ranged from 1 to 8 members. Primary caregivers were predominantly female (38/51, 75%), White (44/51, 86%), married (37/51, 73%), college educated (36/51, 71%), and were, on average, 60.3 (SD 9.8) years of age, with 18% (9/51) living in a rural area. CareVirtue usage varied along 2 axes (total usage and type of usage), with heterogeneity in how the most engaged care networks interacted with CareVirtue. Interviews identified a range of ways CareVirtue was useful, including practically, organizationally, and emotionally. On the Behavioral Intention Scale, 72% (26/36) of primary caregivers reported an average score of at least 3, indicating an above average intention to use. The average was 81.8 (SD 12.8) for the System Usability Scale score, indicating “good” usability, and 3.4 (SD 1.0) for perceived usefulness, suggesting above average usefulness. The average confidence score increased significantly over the study duration from 7.8 in week 2 to 8.9 in week 7 (P=.005; r=0.91, 95% CI 0.84-0.95). The following sociodemographic characteristics were associated with posting in the journal: retired (mean 59.5 posts for retired caregivers and mean 16.9 for nonretired caregivers), income (mean 13 posts for those reporting >US $100K and mean 55.4 for those reporting <US $100K), relationship to care recipient (mean 18.7 posts for child and mean 56.4 for partners/spouses), and living situation (mean 44.7 for those who live with the care recipient and mean 13.1 for those who do not). Older care recipients were associated with fewer posts (r=–0.33, 95% CI –0.55 to –0.06). CONCLUSIONS: This study establishes the acceptability and feasibility of CareVirtue among ADRD care networks and highlights the importance of designing flexible, multicomponent interventions that allow care networks to tailor their engagement according to their needs. The results will be used to improve CareVirtue feasibility and acceptability in preparation for a subsequent randomized trial to test CareVirtue’s effectiveness in improving caregiver outcomes.
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spelling pubmed-93893792022-08-20 A Web-Based Platform (CareVirtue) to Support Caregivers of People Living With Alzheimer Disease and Related Dementias: Mixed Methods Feasibility Study Boutilier, Justin J Loganathar, Priya Linden, Anna Scheer, Eleanore Noejovich, Sofia Elliott, Christian Zuraw, Matthew Werner, Nicole E JMIR Aging Original Paper BACKGROUND: People living with Alzheimer disease and related dementias (ADRD) require prolonged and complex care that is primarily managed by informal caregivers who face significant unmet needs regarding support for communicating and coordinating across their informal care network. To address this unmet need, we developed CareVirtue, which provides (1) the ability to invite care network members; (2) a care guide detailing the care plan; (3) a journal where care network members can document, communicate, and coordinate; (4) a shared calendar; and (5) vetted geolocated caregiver resources. OBJECTIVE: This study aims to evaluate CareVirtue’s feasibility based on: (1) Who used CareVirtue? (2) How did caregivers use CareVirtue? (3) How did caregivers perceive the acceptability of CareVirtue? (4) What factors were associated with CareVirtue use? METHODS: We conducted a feasibility study with 51 care networks over a period of 8 weeks and used a mixed methods approach that included both quantitative CareVirtue usage data and semistructured interviews. RESULTS: Care networks ranged from 1 to 8 members. Primary caregivers were predominantly female (38/51, 75%), White (44/51, 86%), married (37/51, 73%), college educated (36/51, 71%), and were, on average, 60.3 (SD 9.8) years of age, with 18% (9/51) living in a rural area. CareVirtue usage varied along 2 axes (total usage and type of usage), with heterogeneity in how the most engaged care networks interacted with CareVirtue. Interviews identified a range of ways CareVirtue was useful, including practically, organizationally, and emotionally. On the Behavioral Intention Scale, 72% (26/36) of primary caregivers reported an average score of at least 3, indicating an above average intention to use. The average was 81.8 (SD 12.8) for the System Usability Scale score, indicating “good” usability, and 3.4 (SD 1.0) for perceived usefulness, suggesting above average usefulness. The average confidence score increased significantly over the study duration from 7.8 in week 2 to 8.9 in week 7 (P=.005; r=0.91, 95% CI 0.84-0.95). The following sociodemographic characteristics were associated with posting in the journal: retired (mean 59.5 posts for retired caregivers and mean 16.9 for nonretired caregivers), income (mean 13 posts for those reporting >US $100K and mean 55.4 for those reporting <US $100K), relationship to care recipient (mean 18.7 posts for child and mean 56.4 for partners/spouses), and living situation (mean 44.7 for those who live with the care recipient and mean 13.1 for those who do not). Older care recipients were associated with fewer posts (r=–0.33, 95% CI –0.55 to –0.06). CONCLUSIONS: This study establishes the acceptability and feasibility of CareVirtue among ADRD care networks and highlights the importance of designing flexible, multicomponent interventions that allow care networks to tailor their engagement according to their needs. The results will be used to improve CareVirtue feasibility and acceptability in preparation for a subsequent randomized trial to test CareVirtue’s effectiveness in improving caregiver outcomes. JMIR Publications 2022-08-04 /pmc/articles/PMC9389379/ /pubmed/35925654 http://dx.doi.org/10.2196/36975 Text en ©Justin J Boutilier, Priya Loganathar, Anna Linden, Eleanore Scheer, Sofia Noejovich, Christian Elliott, Matthew Zuraw, Nicole E Werner. Originally published in JMIR Aging (https://aging.jmir.org), 04.08.2022. https://creativecommons.org/licenses/by/4.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Aging, is properly cited. The complete bibliographic information, a link to the original publication on https://aging.jmir.org, as well as this copyright and license information must be included.
spellingShingle Original Paper
Boutilier, Justin J
Loganathar, Priya
Linden, Anna
Scheer, Eleanore
Noejovich, Sofia
Elliott, Christian
Zuraw, Matthew
Werner, Nicole E
A Web-Based Platform (CareVirtue) to Support Caregivers of People Living With Alzheimer Disease and Related Dementias: Mixed Methods Feasibility Study
title A Web-Based Platform (CareVirtue) to Support Caregivers of People Living With Alzheimer Disease and Related Dementias: Mixed Methods Feasibility Study
title_full A Web-Based Platform (CareVirtue) to Support Caregivers of People Living With Alzheimer Disease and Related Dementias: Mixed Methods Feasibility Study
title_fullStr A Web-Based Platform (CareVirtue) to Support Caregivers of People Living With Alzheimer Disease and Related Dementias: Mixed Methods Feasibility Study
title_full_unstemmed A Web-Based Platform (CareVirtue) to Support Caregivers of People Living With Alzheimer Disease and Related Dementias: Mixed Methods Feasibility Study
title_short A Web-Based Platform (CareVirtue) to Support Caregivers of People Living With Alzheimer Disease and Related Dementias: Mixed Methods Feasibility Study
title_sort web-based platform (carevirtue) to support caregivers of people living with alzheimer disease and related dementias: mixed methods feasibility study
topic Original Paper
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9389379/
https://www.ncbi.nlm.nih.gov/pubmed/35925654
http://dx.doi.org/10.2196/36975
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