The Value of Technology to Support Dyadic Caregiving for Individuals Living With Heart Failure: Qualitative Descriptive Study

Abstract

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.

Caregivers' Contributions to Heart Failure Self-care

“…Although few articles reported "hands-on" self-care maintenance activities, such as caregivers directly administering medications (n = 5/58, 9%), all articles reported "hands-off"' maintenance activities, India (2) 36,41 Iran (4) 14,27,58,63 Italy (3) 15,25,51 Jordan (1) 13 Lithuania (1) 11 Norway (3) 11,42,61 Portugal (1) 54 Slovenia (1) 57 South Korea (1) 33 Sweden (3) 16,30,49 United Kingdom (7) Not specified (1) 38 Australia (1) 24 Japan (1) 32 Sweden (1) 43 United States (4) 22,52,60,67 Sweden (1) 72 United Kingdom (1) 74 United States (5) [68][69][70][71]73 Sample size (range of no. of participants) Mother/father (5) 11,21,26,39,53 Sibling (4) 21,38,44,53 Grandchildren (5) 35,46,48,…”

“…Sharing tracked information during appointments, sending information using portals/telemonitoring systems/ apps 11,16,26,41,46,55,59 In response to signs/symptoms, managing telemonitoring apps 26,27,30,31,37,41,51,55,59,64,72 Tracking clinical data Vital signs, weight, urine output, symptoms 11,26,37, 40,41,72,73 26,37 Training/mastery Developing strategies, overseeing devices 11,25,26…”

“…To do monitoring, to recognize signs/symptoms activities emerged from the data across studies: (1) collecting or tracking clinical data such as using/ managing technology or systems that collected or tracked clinical data, 11,25,26,29,37,40,41,46,55,56,72,73 (2) monitoring for signs/symptoms of HF such as physical assessments (eg, listening to the patient's heart) or routine observations for signs/symptoms, and (3) communication with providers (either active or passive) to facilitate ongoing clinician awareness of the patient's condition (eg, sharing tracked information during appointments and using portals or telemonitoring systems/apps to send monitored information to providers). Importantly, communication activities in the latter category were distinct from symptom management-related communication in that they were part of regular monitoring activities that occurred independent of changes in the patient's condition.…”

“…Involvement of caregivers in existing patient-facing symptom monitoring and tracking strategies was introduced (ie, in-home monitoring), and when combined with telehealth, an emphasis on communication trended upward. 11,26 Self-care Management The number of studies describing caregiver self-care management activities remained steady across the time period (2013-2022). There were no patterns or trends observed in self-care management topics or activities over time.…”

Well-Being, Physical Activity, and Social Support in Octogenarians with Heart Failure during COVID-19 Confinement: A Mixed-Methods Study

“…Previous quantitative studies have analyzed how confinement affected patients with HF, in terms of fear to visit the hospital [ 3 ], differences in physical activity [ 11 , 12 ], mental health [ 13 ], safety of telehealth programs [ 14 ], etc. Few qualitative studies have been performed in order to characterize the value of technology in supporting caregiving for individuals with HF [ 15 ], examine the caregiving experiences and coping strategies of older adults with HF during the ongoing pandemic [ 16 ], and explore patients’ and clinicians’ experiences of managing HF during COVID-19 pandemic [ 17 ]. However, to our knowledge, no mixed-methods studies have been conducted in this regard.…”