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The Value of Technology to Support Dyadic Caregiving for Individuals Living With Heart Failure: Qualitative Descriptive Study
BACKGROUND: The demand for health services to meet the chronic health needs of the aging population is significant and remains unmet because of the limited supply of clinical resources. Specifically, in managing heart failure (HF), digital health sought to address this gap during the COVID-19 pandem...
Autores principales: | , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
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JMIR Publications
2022
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9494221/ https://www.ncbi.nlm.nih.gov/pubmed/36069782 http://dx.doi.org/10.2196/40108 |
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author | El-Dassouki, Noor Pfisterer, Kaylen Benmessaoud, Camila Young, Karen Ge, Kelly Lohani, Raima Saragadam, Ashish Pham, Quynh |
author_facet | El-Dassouki, Noor Pfisterer, Kaylen Benmessaoud, Camila Young, Karen Ge, Kelly Lohani, Raima Saragadam, Ashish Pham, Quynh |
author_sort | El-Dassouki, Noor |
collection | PubMed |
description | BACKGROUND: The demand for health services to meet the chronic health needs of the aging population is significant and remains unmet because of the limited supply of clinical resources. Specifically, in managing heart failure (HF), digital health sought to address this gap during the COVID-19 pandemic but highlighted an access issue for those who could not use technology-mediated health care services without the support of their informal caregivers (ICs). The complexity of managing HF symptoms and recurrent exacerbations requires many patients to comanage their illness with their ICs in a care dyad, working together to optimize patient outcomes and health-related quality of life. However, most HF programs have missed the opportunity to consider the dyadic perspective despite interdependencies on HF outcomes. OBJECTIVE: This study aims to characterize the value of technology in supporting caregiving for individuals living with HF. METHODS: Motivated by an observed unique pattern of engagement in patients enrolled in our Medly HF management program at the Peter Munk Cardiac Centre in Toronto, Canada, we conducted 20 semistructured interviews with a convenience sample of ICs. All interviews were analyzed using the iterative refinement of a codeveloped codebook. The team maintained reflexivity journals to reflect the impact of their positionality on their coding. Themes were first derived deductively using HF typologies (patient-oriented dyads, caregiver-oriented dyads, and collaboratively oriented dyads) and then inductively refined and recategorized based on concepts from the van Houtven et al framework. RESULTS: We believe that there is a need to formally and intentionally expand HF technologies to include dyadic needs and goals. We suggest defining 3 opportunities in which value can be added to technological design. First, identify how technology may be leveraged to increase psychological bandwidth by reducing uncertainty and providing peace of mind. We found that actionable feedback was highly desired by both partners. Second, develop technology that can serve as a member of the dyad’s support system. In our experience, automated prompts for patients to take measurements can mimic the support typically provided by ICs and ease their workload. Third, consider how technology can mitigate the dyad’s clinical knowledge requirements and learning curve. Our approach includes real-time actionable feedback paired with a human-in-the-loop, nurse-led model of care. CONCLUSIONS: Our findings identified a need to focus on improving the dyadic experience as a whole by building IC functionality into digital health self-management interventions. Through a shared model of care that supports the role of the patient in their own HF management, includes ICs to expand and enhance the patient’s capacity to care, and acknowledges the need of ICs to care for themselves, we anticipate improved outcomes for both partners. |
format | Online Article Text |
id | pubmed-9494221 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2022 |
publisher | JMIR Publications |
record_format | MEDLINE/PubMed |
spelling | pubmed-94942212022-09-23 The Value of Technology to Support Dyadic Caregiving for Individuals Living With Heart Failure: Qualitative Descriptive Study El-Dassouki, Noor Pfisterer, Kaylen Benmessaoud, Camila Young, Karen Ge, Kelly Lohani, Raima Saragadam, Ashish Pham, Quynh J Med Internet Res Original Paper BACKGROUND: The demand for health services to meet the chronic health needs of the aging population is significant and remains unmet because of the limited supply of clinical resources. Specifically, in managing heart failure (HF), digital health sought to address this gap during the COVID-19 pandemic but highlighted an access issue for those who could not use technology-mediated health care services without the support of their informal caregivers (ICs). The complexity of managing HF symptoms and recurrent exacerbations requires many patients to comanage their illness with their ICs in a care dyad, working together to optimize patient outcomes and health-related quality of life. However, most HF programs have missed the opportunity to consider the dyadic perspective despite interdependencies on HF outcomes. OBJECTIVE: This study aims to characterize the value of technology in supporting caregiving for individuals living with HF. METHODS: Motivated by an observed unique pattern of engagement in patients enrolled in our Medly HF management program at the Peter Munk Cardiac Centre in Toronto, Canada, we conducted 20 semistructured interviews with a convenience sample of ICs. All interviews were analyzed using the iterative refinement of a codeveloped codebook. The team maintained reflexivity journals to reflect the impact of their positionality on their coding. Themes were first derived deductively using HF typologies (patient-oriented dyads, caregiver-oriented dyads, and collaboratively oriented dyads) and then inductively refined and recategorized based on concepts from the van Houtven et al framework. RESULTS: We believe that there is a need to formally and intentionally expand HF technologies to include dyadic needs and goals. We suggest defining 3 opportunities in which value can be added to technological design. First, identify how technology may be leveraged to increase psychological bandwidth by reducing uncertainty and providing peace of mind. We found that actionable feedback was highly desired by both partners. Second, develop technology that can serve as a member of the dyad’s support system. In our experience, automated prompts for patients to take measurements can mimic the support typically provided by ICs and ease their workload. Third, consider how technology can mitigate the dyad’s clinical knowledge requirements and learning curve. Our approach includes real-time actionable feedback paired with a human-in-the-loop, nurse-led model of care. CONCLUSIONS: Our findings identified a need to focus on improving the dyadic experience as a whole by building IC functionality into digital health self-management interventions. Through a shared model of care that supports the role of the patient in their own HF management, includes ICs to expand and enhance the patient’s capacity to care, and acknowledges the need of ICs to care for themselves, we anticipate improved outcomes for both partners. JMIR Publications 2022-09-07 /pmc/articles/PMC9494221/ /pubmed/36069782 http://dx.doi.org/10.2196/40108 Text en ©Noor El-Dassouki, Kaylen Pfisterer, Camila Benmessaoud, Karen Young, Kelly Ge, Raima Lohani, Ashish Saragadam, Quynh Pham. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 07.09.2022. 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 the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on https://www.jmir.org/, as well as this copyright and license information must be included. |
spellingShingle | Original Paper El-Dassouki, Noor Pfisterer, Kaylen Benmessaoud, Camila Young, Karen Ge, Kelly Lohani, Raima Saragadam, Ashish Pham, Quynh The Value of Technology to Support Dyadic Caregiving for Individuals Living With Heart Failure: Qualitative Descriptive Study |
title | The Value of Technology to Support Dyadic Caregiving for Individuals Living With Heart Failure: Qualitative Descriptive Study |
title_full | The Value of Technology to Support Dyadic Caregiving for Individuals Living With Heart Failure: Qualitative Descriptive Study |
title_fullStr | The Value of Technology to Support Dyadic Caregiving for Individuals Living With Heart Failure: Qualitative Descriptive Study |
title_full_unstemmed | The Value of Technology to Support Dyadic Caregiving for Individuals Living With Heart Failure: Qualitative Descriptive Study |
title_short | The Value of Technology to Support Dyadic Caregiving for Individuals Living With Heart Failure: Qualitative Descriptive Study |
title_sort | value of technology to support dyadic caregiving for individuals living with heart failure: qualitative descriptive study |
topic | Original Paper |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9494221/ https://www.ncbi.nlm.nih.gov/pubmed/36069782 http://dx.doi.org/10.2196/40108 |
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