Optimizing Virtual Health to Empower Caregivers: Informal Caregivers’ Experiences of Virtual Care

Abstract

Background: The COVID-19 pandemic accelerated the shift from traditional in-person healthcare to virtual care, impacting the role of unpaid caregivers. In the US, 21% of the population provide unpaid care (1). In Canada, more than 75% of healthcare is provided by informal, unpaid caregivers (2). Most unpaid caregivers are between 50 to 75 years old and provide care to their parents and/or partners (3). Informal caregivers oversee a large portion of a patient's care, many of whom are older adults, women, and racialized. Despite their significant contribution, the perspectives of caregivers regarding virtual care remain overlooked in health research. This study, as part of a larger multidisciplinary research effort, aims to explore caregiver experiences with virtual care, foster collaboration among virtual healthcare and caregiving stakeholders, and co-develop a participatory research agenda focused on developing virtual care solutions that can empower caregivers and promote equity.

Methods: To gain insights into caregivers' experiences with virtual care, we conducted a comprehensive scoping review and 12 key informant interviews between September 2023 and March 2024. Our scoping review adhered to the JBI methodology for search strategy and followed the PRISMA-ScR protocol for reporting. We systematically searched academic databases, including PubMed, Web of Science, CINAHL, and Scopus, as well as grey literature sources such as reports and keyword searches from related CSOs/NGOs. Our search focused on variations of "caregiver" and "telemedicine" or "virtual care," emphasizing experiences, perceptions, attitudes, and views. We included articles published in English from January 2013 to July 2023, resulting in 69 articles for review. Additionally, we conducted 12 key informant interviews with representatives from various stakeholder groups, including informal caregivers, health authorities, clinicians, patients, virtual care technology companies, and community organizations.

Results and Discussion: Both the literature and interviews revealed that existing research and practice often failed to adequately address caregivers' unique experiences, and frequently tend to view caregivers and patients as a single unit with less recognition of caregiver needs and experiences as separate from patients’. Caregivers expressed a mix of positive and negative attitudes towards virtual care, citing benefits such as convenience and easier access to specialists, alongside concerns about communication with clinicians and privacy issues. There was a recognized need for tailored care, with some caregivers preferring in-person interactions, while others preferred a hybrid care model. Moreover, caregivers' experiences varied based on their roles and the type of virtual care utilized, emphasizing the importance of personalized approaches. Despite some reporting improvements in wellbeing and access to support, challenges such as navigating complex health information and disparities in access to care persisted. Interviews also revealed that caregiver-inclusive technologies are in demand, and the digital divide presents challenges especially for older caregivers. These findings will provide the basis for further steps of this research project including co-developing a research agenda aimed at improving the effectiveness of virtual care services.