Family Caregivers’ Experiences With Telehealth During COVID-19: Insights From Michigan

INTRODUCTION

One of the major shifts in health care delivery during the COVID-19 pandemic has been the rapid implementation of telehealth (hereon, specifically audio/video mediated synchronous health care visits) to improve patients’ access to health care services while limiting risk of exposure to COVID-19 in health care settings.^1,2 Older adults stand to benefit tremendously from telehealth as they are more likely to have multiple chronic conditions requiring multiple health care encounters with different types of providers; yet, they are less likely to use telehealth because of barriers such as digital literacy and privacy concerns.^3,4 Some older adults receive assistance with telehealth from family caregivers.⁵ In the current study, we conducted a survey with family caregivers residing in Michigan to learn about their older relative’s experiences with telehealth visits and caregivers’ participation and perceived benefits and challenges with those visits.⁶

METHODS

We recruited adult family caregivers using the University of Michigan Institute for Clinical and Health Research’s online research platform between May 1 and June 30, 2020.⁷ We provided a broad, inclusive definition of “family caregivers” and prompted participants to message the study team with any questions about their eligibility (being an unpaid family caregiver of a relative aged ≥60 years residing in Michigan). Of 126 participants who opted into the study, 90 met our eligibility criteria and completed a 10-minute Qualtrics survey which included closed- and open-ended questions. Survey questions were adapted from previous surveys and developed by the study team⁸ (Supplemental Appendix).

We summarized information about participants’ relative’s use of telehealth (eg, number of visits, if any, purpose of visit) and caregivers’ participation in those visits. Open-ended questions were related to (1) concerns about using telehealth to communicate with their relative’s health care provider and (2) general comments about experiences or thoughts about telehealth during COVID-19 (Supplemental Appendix). We provided participants with a standard definition of telehealth.^9,10 We conducted an inductive thematic analysis of responses to these open-ended questions. The study team created an initial codebook, then iteratively reviewed and refined the codebook and coded all responses. The study was given permission with exemption from the (blinded) Institutional Review Board. Participants provided written consent.

RESULTS

A total of 90 family caregivers completed the survey. The average age was 53.1 years. A majority identified with being a woman (n = 78) and White, non-Hispanic (n = 82). Over one-half of (n = 48) reported being in very good to excellent health before COVID-19; fewer (n = 40) reported being in very good to excellent health during COVID-19. Almost one-half of the caregivers (n = 41) reported that their older relative had undergone a telehealth visit via telephone or video during the study period with a general doctor (n = 18), a specialist doctor (n = 17), or another provider (eg, nurse practitioner, mental health, or other provider [n = 6]) either for a new or ongoing health condition, prescription renewal, wellness visit, or end-of-life consultation. About one-third of caregivers reside in the same household as their relative (n = 34). Most caregivers support relatives with chronic condition(s) (eg, cancer, heart disease) (n = 59), orthopedic/musculoskeletal issues (n = 46), or memory loss (n = 40). Over one-half of caregivers (n = 46) support a relative age ≥80 years.

Nearly one-quarter of participants (n = 20) described benefits of telehealth in open-ended comments about their perspectives on telehealth including those whose relative had a telehealth visit (n = 13) and those whose relative had not (n = 7) (Table 1). Perceived benefits included increasing access to care, continuity of care, limiting risk of exposure to COVID-19, and improving the relationship and rapport between their older relatives and care providers. More participants (n = 29), some of whom also reported benefits, described concerns about their older relative’s ability to access and use the technology independently, relevance of telehealth for addressing their relatives’ specific needs and concerns, and patient-clinician rapport. For example, some participants were skeptical of the efficacy of the approach in helping their relatives with chronic conditions requiring special types of medical technologies, a doctor’s touch, hands-on assessments (eg, muscle strength) or close visual observation. Another concern was that their relative’s worries would be dismissed via telehealth, and/or that their relative would be less forthcoming and honest about their concerns via telehealth.

Of those caregivers with a relative who had a telehealth visit (n = 41), less than one-half (n = 16) participated from the same location as their older relative (ie, part of the same audio/video connection) and most (n = 10) live in the same household as their older relative. Caregivers saw their inclusion as being critical to ensuring that questions and concerns were addressed even if their older relatives were not forthcoming on their own (Table 2).

DISCUSSION

Family caregivers of older adults perceive several benefits and barriers to using telehealth for health care visits. Telehealth is likely to persist beyond COVID-19 given its demonstrated effectiveness in increasing access and continuity of care.¹ Clinicians should discuss benefits and limitations of teleheath with older patients and their caregivers, so patients are empowered to decide between in-person or virtual care. Policies to include family caregivers in telehealth visits may be critical for facilitating their older adult’s access to health care via telehealth, and therefore, older adults’ ability to age in place. In the absence of a co-located caregiver, clinicians should also work with patients and social workers to identify trusted individuals who can provide technical support and advocacy. Despite limits to generalizability, this rapid assessment during COVID-19 provides initial findings that can be used for future studies examining family caregivers’ perceptions and experiences with their older relative’s telehealth visits.