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The Feasibility and Utility of a Personal Health Record for Persons With Dementia and Their Family Caregivers for Web-Based Care Coordination: Mixed Methods Study
BACKGROUND: Managing the complex and long-term care needs of persons living with Alzheimer disease and related dementias (ADRD) can adversely impact the health of informal caregivers and their care recipients. Web-based personal health records (PHRs) are one way to potentially alleviate a caregiver’...
Autores principales: | , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
JMIR Publications
2020
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7381256/ https://www.ncbi.nlm.nih.gov/pubmed/32589158 http://dx.doi.org/10.2196/17769 |
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author | Peterson, Colleen M Mikal, Jude P McCarron, Hayley R Finlay, Jessica M Mitchell, Lauren L Gaugler, Joseph E |
author_facet | Peterson, Colleen M Mikal, Jude P McCarron, Hayley R Finlay, Jessica M Mitchell, Lauren L Gaugler, Joseph E |
author_sort | Peterson, Colleen M |
collection | PubMed |
description | BACKGROUND: Managing the complex and long-term care needs of persons living with Alzheimer disease and related dementias (ADRD) can adversely impact the health of informal caregivers and their care recipients. Web-based personal health records (PHRs) are one way to potentially alleviate a caregiver’s burden by simplifying ADRD health care management OBJECTIVE: This study aimed to evaluate Personal Health Record for Persons with Dementia and Their Family Caregivers (PHR-ADRD), a free web-based information exchange tool, using a multiphase mixed methods approach. METHODS: Dementia caregivers (N=34) were surveyed for their well-being and perceptions of PHR-ADRD feasibility and utility at 6 and 12 months using close- and open-ended questions as well as a semistructured interview (n=8). Exploratory analyses compared participants’ characteristics as well as PHR-ADRD use and experiences based on overall favorability status. RESULTS: Feasibility and utility scores decreased over time, but a subset of participants indicated that the system was helpful. Quantitative comparisons could not explain why some participants indicated favorable, neutral, or unfavorable views of the system overall or had not engaged with PHR-ADRD. Qualitative findings suggested that technology literacy and primary care provider buy-in were barriers. Both qualitative and qualitative findings indicated that time constraints to learn and use the system affected most participants. CONCLUSIONS: Development and dissemination of PHRs for family caregivers of persons with ADRD should aim to make systems user-friendly for persons with limited time and technological literacy. Establishing health care provider buy-in may be essential to the future success of any PHR system. |
format | Online Article Text |
id | pubmed-7381256 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2020 |
publisher | JMIR Publications |
record_format | MEDLINE/PubMed |
spelling | pubmed-73812562020-08-07 The Feasibility and Utility of a Personal Health Record for Persons With Dementia and Their Family Caregivers for Web-Based Care Coordination: Mixed Methods Study Peterson, Colleen M Mikal, Jude P McCarron, Hayley R Finlay, Jessica M Mitchell, Lauren L Gaugler, Joseph E JMIR Aging Original Paper BACKGROUND: Managing the complex and long-term care needs of persons living with Alzheimer disease and related dementias (ADRD) can adversely impact the health of informal caregivers and their care recipients. Web-based personal health records (PHRs) are one way to potentially alleviate a caregiver’s burden by simplifying ADRD health care management OBJECTIVE: This study aimed to evaluate Personal Health Record for Persons with Dementia and Their Family Caregivers (PHR-ADRD), a free web-based information exchange tool, using a multiphase mixed methods approach. METHODS: Dementia caregivers (N=34) were surveyed for their well-being and perceptions of PHR-ADRD feasibility and utility at 6 and 12 months using close- and open-ended questions as well as a semistructured interview (n=8). Exploratory analyses compared participants’ characteristics as well as PHR-ADRD use and experiences based on overall favorability status. RESULTS: Feasibility and utility scores decreased over time, but a subset of participants indicated that the system was helpful. Quantitative comparisons could not explain why some participants indicated favorable, neutral, or unfavorable views of the system overall or had not engaged with PHR-ADRD. Qualitative findings suggested that technology literacy and primary care provider buy-in were barriers. Both qualitative and qualitative findings indicated that time constraints to learn and use the system affected most participants. CONCLUSIONS: Development and dissemination of PHRs for family caregivers of persons with ADRD should aim to make systems user-friendly for persons with limited time and technological literacy. Establishing health care provider buy-in may be essential to the future success of any PHR system. JMIR Publications 2020-06-26 /pmc/articles/PMC7381256/ /pubmed/32589158 http://dx.doi.org/10.2196/17769 Text en ©Colleen M Peterson, Jude P Mikal, Hayley R McCarron, Jessica M Finlay, Lauren L Mitchell, Joseph E Gaugler. Originally published in JMIR Aging (http://aging.jmir.org), 26.06.2020. 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 http://aging.jmir.org, as well as this copyright and license information must be included. |
spellingShingle | Original Paper Peterson, Colleen M Mikal, Jude P McCarron, Hayley R Finlay, Jessica M Mitchell, Lauren L Gaugler, Joseph E The Feasibility and Utility of a Personal Health Record for Persons With Dementia and Their Family Caregivers for Web-Based Care Coordination: Mixed Methods Study |
title | The Feasibility and Utility of a Personal Health Record for Persons With Dementia and Their Family Caregivers for Web-Based Care Coordination: Mixed Methods Study |
title_full | The Feasibility and Utility of a Personal Health Record for Persons With Dementia and Their Family Caregivers for Web-Based Care Coordination: Mixed Methods Study |
title_fullStr | The Feasibility and Utility of a Personal Health Record for Persons With Dementia and Their Family Caregivers for Web-Based Care Coordination: Mixed Methods Study |
title_full_unstemmed | The Feasibility and Utility of a Personal Health Record for Persons With Dementia and Their Family Caregivers for Web-Based Care Coordination: Mixed Methods Study |
title_short | The Feasibility and Utility of a Personal Health Record for Persons With Dementia and Their Family Caregivers for Web-Based Care Coordination: Mixed Methods Study |
title_sort | feasibility and utility of a personal health record for persons with dementia and their family caregivers for web-based care coordination: mixed methods study |
topic | Original Paper |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7381256/ https://www.ncbi.nlm.nih.gov/pubmed/32589158 http://dx.doi.org/10.2196/17769 |
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