Cargando…

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...

Descripción completa

Detalles Bibliográficos
Autores principales: El-Dassouki, Noor, Pfisterer, Kaylen, Benmessaoud, Camila, Young, Karen, Ge, Kelly, Lohani, Raima, Saragadam, Ashish, Pham, Quynh
Formato: Online Artículo Texto
Lenguaje:English
Publicado: JMIR Publications 2022
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
_version_ 1784793767720517632
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
work_keys_str_mv AT eldassoukinoor thevalueoftechnologytosupportdyadiccaregivingforindividualslivingwithheartfailurequalitativedescriptivestudy
AT pfistererkaylen thevalueoftechnologytosupportdyadiccaregivingforindividualslivingwithheartfailurequalitativedescriptivestudy
AT benmessaoudcamila thevalueoftechnologytosupportdyadiccaregivingforindividualslivingwithheartfailurequalitativedescriptivestudy
AT youngkaren thevalueoftechnologytosupportdyadiccaregivingforindividualslivingwithheartfailurequalitativedescriptivestudy
AT gekelly thevalueoftechnologytosupportdyadiccaregivingforindividualslivingwithheartfailurequalitativedescriptivestudy
AT lohaniraima thevalueoftechnologytosupportdyadiccaregivingforindividualslivingwithheartfailurequalitativedescriptivestudy
AT saragadamashish thevalueoftechnologytosupportdyadiccaregivingforindividualslivingwithheartfailurequalitativedescriptivestudy
AT phamquynh thevalueoftechnologytosupportdyadiccaregivingforindividualslivingwithheartfailurequalitativedescriptivestudy
AT eldassoukinoor valueoftechnologytosupportdyadiccaregivingforindividualslivingwithheartfailurequalitativedescriptivestudy
AT pfistererkaylen valueoftechnologytosupportdyadiccaregivingforindividualslivingwithheartfailurequalitativedescriptivestudy
AT benmessaoudcamila valueoftechnologytosupportdyadiccaregivingforindividualslivingwithheartfailurequalitativedescriptivestudy
AT youngkaren valueoftechnologytosupportdyadiccaregivingforindividualslivingwithheartfailurequalitativedescriptivestudy
AT gekelly valueoftechnologytosupportdyadiccaregivingforindividualslivingwithheartfailurequalitativedescriptivestudy
AT lohaniraima valueoftechnologytosupportdyadiccaregivingforindividualslivingwithheartfailurequalitativedescriptivestudy
AT saragadamashish valueoftechnologytosupportdyadiccaregivingforindividualslivingwithheartfailurequalitativedescriptivestudy
AT phamquynh valueoftechnologytosupportdyadiccaregivingforindividualslivingwithheartfailurequalitativedescriptivestudy