Abstract
Introduction:
The COVID-19 pandemic has altered access to health care; it remains unclear how patients with chronic illness and disability and their family caregivers are adapting to these changes. In this study, we examined changes in family caregiver roles helping care recipients with chronic illness and disability navigate health care needs during the COVID-19 pandemic.
Methods:
From April 15 to May 27, 2020, we distributed online and telephone surveys to family caregiver members of a population-based regional research registry. Caregivers reported whether they were helping “more,” “less,” or the “same” with ten health care activities (e.g., filling prescriptions, attending medical appointments) now, compared to before the coronavirus pandemic. Using multivariable logistic regression models, we examined caregiver and caregiving context characteristics associated with helping more with 1 or more health care activities.
Results:
Of 561 caregiver respondents, mean age was 59 years, 76% were women, and 56% co-resided with care recipients. Many caregivers (59%) reported increased help with 1 or more health care activities since the pandemic. Caregivers reported greater help getting medical supplies (31%) and attending care recipients’ phone (21%) and video (16%) medical appointments. Women (OR 1.55; 95% CI 1.02–2.36) and caregivers assisting with short-term physical conditions were more likely to help more with 1 or more health care activities (OR 2.81; 95% CI 1.20–6.59).
Discussion:
Family caregivers reported their responsibilities helping care recipients with chronic conditions and disabilities stay engaged with health care increased since the pandemic. Providers and health systems should consider targeted strategies to support caregivers helping vulnerable patients access necessary care.
Keywords: caregiving, family caregivers, COVID-19, healthcare activities, telehealth
The COVID-19 pandemic has significantly impacted health care access due to restrictions on in-person visits and competing demands on health care workers. These changes disproportionately affect patients with chronic illness and disability and the family caregivers on whom they often rely for carrying out vital health care activities, including communicating with providers and attending medical visits (Wolff et al., 2016). Caregivers may face barriers to helping care recipients during the pandemic due to social distancing concerns, restrictions to visitation, and difficulties accessing health care and caregiving resources (Chan et al., 2020). Yet, it remains unknown whether caregiver responsibilities have shifted as a result of these potential challenges. Caregivers can offer key linkages to care for vulnerable patients. Understanding changes in caregiver roles due to the pandemic is vital to supporting better patient and caregiver outcomes. In this study, we examined perceived changes among family caregivers of care recipients with chronic illness and disability in their activities supporting access to and use of health care during the COVID-19 pandemic.
Method
From April 15 to May 27, 2020; using a combination of online and telephone methods, we distributed surveys to family caregiver members of the University of Pittsburgh’s University Center for Social & Urban Research (UCSUR) research registry. This registry includes approximately 1,000 members, who self-identify as a family caregiver. The research registry has been constructed over the past ten years by recruitment through probability surveys and population-based clinical studies conducted by UCSUR. Registry members represent a range of sociodemographic characteristics, including age, income, education, and employment status, and are broadly representative of the Pittsburgh region. Registry members’ sociodemographic and contact information are updated annually. All members have agreed to be contacted for future research studies. The initial multiple-choice UCSUR survey was sent via e-mail on April 15, 2020, with follow-up emails to nonrespondents sent weekly for 3 weeks. This resulted in a 43% caregiver online survey response rate. Telephone calls to those who did not respond to the initial online survey and follow up emails yielded a 60% response rate. In order to reach additional caregivers, we provided an open web link to the survey to local and national disability and caregiver organizations to distribute to their membership. In total, 610 caregivers responded to the survey through the combined outreach methods.
Caregivers self-identified as providing unpaid care to a family member, spouse/partner, or friend because of a chronic illness or disability. Caregivers self-reported sociodemographic information, including sex and age (both caregiver and care recipient), and caregiver race, education, household income, marital status, and employment situation. Caregivers reported their relationship to the care recipient, whether they were co-residing with their care recipient, and the care recipient’s primary reason for needing care. See Table 1 for variable coding. We asked caregivers, “Since the COVID-19 outbreak, how have you been helping your care recipient differently? For each item, please rate whether you are helping with it more, less, or the same as prior to COVID-19.” The ten activities we inquired about related to health care (e.g., filling prescriptions, attending medical appointments). See Table 2 for the full list of health care activities.
Table 1.
Caregiving Characteristics and Caregiver Reported Changes in Assisting Care Recipient With Healthcare Tasks Since COVID-19 Pandemic (n = 561)
| Caregiver characteristics | Total (n = 561), % |
Helping more ≥1 healthcare task* (n = 330), % |
Not helping more ≥1 healthcare task* (n = 231), % |
p |
|---|---|---|---|---|
| Age, mean ± SD | 59.0 ± 13.8 | 57.9 ± 14.0 | 60.4 ± 13.5 | 0.035 |
| Women | 426 (75.9) | 263 (79.7) | 163 (70.6) | 0.013 |
| Race | ||||
| White | 513 (91.4) | 304 (92.1) | 209 (90.5) | 0.232 |
| Black or African American | 41 (7.3) | 22 (6.7) | 19 (8.2) | |
| American Indian or Alaska Native | 19 (3.4) | 16 (4.9) | 3 (31.3) | |
| Asian, Native Hawaiian or Pacific Islander | 5 (0.9) | 2 (0.6) | 3 (1.3) | |
| Ethnicity - Hispanic | 13 (2.3) | 9 (2.7) | 4 (1.7) | |
| Married | 388 (69.2) | 232 (70.3) | 156 (67.5) | 0.484 |
| Highest level of education | ||||
| High school or less | 52 (9.3) | 29 (8.8) | 23 (10.0) | 0.674 |
| Some college, no degree | 150 (26.7) | 94 (28.5) | 56 (24.2) | |
| College degree | 172 (30.7) | 97 (29.4) | 75 (32.5) | |
| Master’s degree or more | 186 (33.2) | 109 (33.0) | 77 (33.3) | |
| Employed | 267 (47.6) | 156 (47.3) | 111 (48.1) | 0.804 |
| Household annual income | ||||
| <$25,000 | 64 (11.4) | 41 (12.4) | 23 (10.0) | 0.252 |
| $25,000–50,000 | 117 (20.9) | 76 (23.0) | 41 (17.8) | |
| $50,000–100,000 | 207 (36.9) | 120 (58.0) | 87 (37.7) | |
| >$100,000 | 152 (27.1) | 82 (24.9) | 70 (30.3) | |
| Caregiving Context | ||||
| Relationship to care recipient | ||||
| Spouse/Partner | 140 (25.0) | 86 (26.1) | 54 (23.4) | 0.449 |
| Adult Child/Child in-law | 197 (35.1) | 106 (32.1) | 91 (39.4) | |
| Parent/Parent in-law | 112 (20.0) | 67 (20.3) | 45 (19.5) | |
| Another relative | 77 (13.7) | 50 (15.2) | 27 (11.7) | |
| Nonrelative | 35 (6.2) | 21 (6.4) | 14 (6.1) | |
| Co-residing | 317 (56.5) | 187 (56.7) | 130 (56.3) | 0.927 |
| Care recipient age, mean ± SD | 65.3 ± 25.1 | 64.7 ± 24.3 | 66.1 ± 26.3 | 0.512 |
| Care recipient reason for needing care | ||||
| Short-term physical condition | 39 (7.0) | 29 (8.8) | 10 (4.3) | 0.048 |
| Long-term physical condition | 383 (68.3) | 229 (69.4) | 154 (66.7) | 0.779 |
| Memory problem | 136 (24.3) | 80 (24.2) | 56 (24.2) | 0.872 |
| Emotional or mental health problem | 128 (22.8) | 82 (24.9) | 46 (19.9) | 0.220 |
| Behavioral issue | 30 (5.4) | 17 (5.2) | 13 (5.6) | 0.753 |
| Developmental or intellectual disorder | 60 (10.7) | 32 (9.7) | 28 (12.1) | 0.309 |
| Care recipient diagnosis of dementia | 75 (13.4) | 39 (11.8) | 36 (15.6) | 0.197 |
The ten healthcare tasks are listed in Table 2. Responses were dichotomized into helping more with and not helping more with ≥1 healthcare task. Not applicable responses were grouped with those not helping more with ≥1 healthcare task.
Table 2.
Caregiver Reported Changes in Assisting Care Recipient with Healthcare Tasks since COVID-19 Pandemic (n = 561)
| Caregiver healthcare task | Change in amount of help provided, n (%) | ||
|---|---|---|---|
| Helping more | Helping same | Helping less | |
| Getting medical supplies | 170 (30.5) | 369 (66.2) | 18 (3.2) |
| Managing new medical problems or symptoms | 154 (27.5) | 393 (70.3) | 12 (2.1) |
| Help care recipient attend phone or video medical appointments | 143 (25.8) | 391 (70.5) | 21 (3.8) |
| Participate in care recipient’s phone medical appointments | 119 (21.4) | 420 (75.5) | 17 (3.1) |
| Contacting healthcare providers with questions | 118 (21.1) | 425 (76.2) | 15 (2.7) |
| Filling care recipient prescription medications | 116 (20.7) | 428 (76.4) | 16 (2.9) |
| Scheduling medical appointments | 106 (19.0) | 426 (76.5) | 25 (4.5) |
| Participate in care recipient’s video medical appointments | 90 (16.2) | 451 (81.3) | 14 (2.5) |
| Help care recipient complete medical tests | 69 (12.4) | 459 (82.4) | 29 (5.2) |
| Participate in care recipient’s in-person medical appointments | 58 (10.4) | 439 (78.8) | 60 (10.8) |
Note. All percentages represent responses for nonmissing values.
Statistical Analysis
We used descriptive statistics to present caregiver sociodemographics, and caregiving context characteristics. Using Chi-Square and Student t-tests, we examined bivariate associations between caregiver and caregiving context characteristics and changes in help with health care activities, comparing participants who reported providing more help with one or more health care activities during the pandemic to those who did not. Using a backward stepwise elimination approach (significance level of p < .20), we selected variables to include in multivariable logistic regression models examining the odds of providing more help with one or more health care activities, since the pandemic. We considered two-sided p values <.05 statistically significant. The University of Pittsburgh IRB approved all study activities.
Results
Of 610 respondents, 561 provided complete data on demographics, caregiving context, and health care activities. Among these caregivers, the mean age was 59 years, 76% were women, and 56% co-resided with care recipients; 68% helped care recipients with long-term physical conditions, 24% helped care recipients with memory loss, and 23% helped care recipients with emotional or mental health problems (see Table 1). Many caregivers (59%) reported providing “more” as opposed to “less” or the “same” amount of help with one or more health care activities since the pandemic began. The most common activities that they helped more with since the pandemic included getting medical supplies (30%) and managing new medical problems or symptoms (27%) (see Table 2). Caregivers reported providing more help to care recipients with attending virtual appointments (26%), and many caregivers directly participated more in care recipients’ phone (21%) and video (16%) appointments after the pandemic began. The biggest decrease in caregiver involvement since the pandemic, was in attending recipients’ in-person medical appointments (11% attended less, and only 10% attended more, since the start of the pandemic). In a multivariable model, women (AOR 1.55; 95% CI 1.02-2.36) and those assisting with short-term physical conditions had a greater likelihood of providing more help with at least one health care activity (AOR 2.81; 95% CI 1.20–6.59) since the pandemic (see Table 3). There was no statistically significant association between caregiver income, education level, care recipient memory loss, or co-residence with the care recipient and likelihood of caregivers providing more help with health care activities since the pandemic.
Table 3.
Logistic Regression for Caregiving Characteristics Associated With Helping More With ≥1 Healthcare Task Since COVID-19 Pandemic
| OR | 95% CI | p | |
|---|---|---|---|
| Caregiver characteristics | |||
| Age | 0.992 | (0.978–1.007) | 0.297 |
| Women | 1.550 | (1.020–2.357) | 0.040 |
| Highest level of education (vs High school or less) | |||
| Some college, no degree | 1.362 | (0.676–2.740) | 0.387 |
| College degree | 1.204 | (0.596–2.434) | 0.605 |
| Master’s degree or more | 1.367 | (0.668–2.797) | 0.392 |
| Household annual income (vs >$25,000) | |||
| $25,000–50,000 | 0.966 | (0.489–1.908) | 0.921 |
| $50,000–100,000 | 0.848 | (0.444–1.620) | 0.618 |
| $>100,000 | 0.614 | (0.308–1.224) | 0.166 |
| Caregiving context | |||
| Care recipient age | 0.992 | (0.981–1.003) | 0.165 |
| Co-residing | 0.922 | (0.614–1.386) | 0.697 |
| Care recipient reason for needing care | |||
| Short-term physical condition | 2.809 | (1.198–6.589) | 0.018 |
| Long-term physical condition | 1.447 | (0.908–2.306) | 0.120 |
| Memory problem | 1.170 | (0.726–1.888) | 0.519 |
| Emotional or mental health problem | 1.330 | (0.808–2.188) | 0.262 |
| Behavioral issue | 0.757 | (0.333–1.721) | 0.507 |
| Developmental or intellectual disorder | 0.721 | (0.378–1.374) | 0.320 |
Note. All percentages represent responses for nonmissing values.
Discussion
The COVID-19 pandemic has disrupted how patients with chronic conditions and their families engage with the health care system. In this study, 59% of family caregivers for those with chronic conditions reported more involvement with care recipients’ access and use of health care since the COVID-19 pandemic. Over 20% of caregivers reported providing more assistance with specific tasks that support engaging with health care providers, including help contacting providers and attending telehealth visits, and less help with in-person visits. Caregivers who lived with versus apart from care recipients were equally likely to report increased help with care recipients’ health care activities, since the pandemic.
Supporting caregiver involvement in care recipients’ medical visits may help address caregivers’ unmet information needs with respect to patient care plans. Caregiver visit involvement has been shown to positively influence patient-provider communication and patients’ ability to adhere to care recommendations (Korfage et al., 2013; Wolff & Roter, 2011). During the pandemic, many health systems quickly shifted from in-person to telehealth (e.g., synchronous video and telephone) visits to reduce COVID-19 exposure risk and this transition likely impacted caregivers’ opportunities to attend in-person visits. Although increase in caregiver involvement in telehealth was the third most common change reported in our study, it may represent more effort to learn and burden than other increased roles; caregivers may require additional telehealth education and support. In addition, increased use of telehealth to care for chronically ill patients is likely to continue even after acute disruptions in in-person care from the pandemic subside, making it beneficial to invest in education of providers to encourage continued caregiver participation in telehealth visits. Health care systems should provide caregivers with education and technical support to facilitate their continued engagement in telehealth visits. Health care systems should also consider how limiting caregivers’ accompaniment of patients to in-person visits may negatively impact quality of care and patients’ health.
Health care providers can supportively engage caregivers to ensure less disruption to patient access to care and disease management. Providers should ask patients, particularly those with chronic conditions and disabilities, whether a caregiver helps them with health care activities and ensure that involved caregivers have the information and resources needed to provide this assistance. Patient portals—online systems that allow patients to view their health information and manage health care activities—can offer convenient platforms for caregiver involvement in tasks such as asking questions of health care providers, refilling medications, and arranging for diagnostic testing (Reed et al., 2018). Caregiver engagement with portals can be particularly beneficial for older patients and those with disabilities who often lack access and technical skills to facilitate portal use (Greysen et al., 2014). However, health systems inconsistently provide caregivers portal access, and barriers exist to registration and use (Latulipe et al., 2020). Modifying portal privacy and security rules may better accommodate caregiver portal use on behalf of care recipients, which can be particularly beneficial during disruptions to in-person care. Educating providers, patients, and caregivers in effective use of patient portals, and designing them to be easily accessible to all types of users, can help ensure these platforms support patient- and family-centered care.
Women, who are known to report higher levels of stress related to caregiving than men (Adelman et al., 2014); were more likely to report increased help with care recipient health care activities. Since the pandemic, women have experienced increased childcare responsibilities and job loss (Bateman & Ross, 2020). These broader demands on women may make it more challenging to provide increased support to care recipients accessing health care during the pandemic. Caregivers helping with short term physical conditions, who may have less experience caregiving, were also more likely to be helping more with health care activities since the pandemic. Caregivers helping with skilled medical tasks are likely to be in high-intensity caregiving situations that place them at risk for burden and their care recipients at risk for neglect (Beach & Schulz, 2017). During the pandemic, caregivers’ unmet needs may be amplified as they adapt to new processes for accessing care within strained health systems.
To capture timely caregiver responses to the pandemic, we primarily recruited from a preexisting regional research registry, limiting national and racial/ethnic diversity in our sample. Participants in the registry agreed to be contacted for research studies and this may make them a more motivated group. Caregivers in our study had significantly higher levels of educational attainment and income than the general surrounding census area. These caregivers may have had more access to caregiving support and resources compared to other caregivers. In asking caregivers about changes in their involvement in health care activities since the pandemic, we did not specify a precise prepandemic time period for comparison. While we presume that most caregivers considered the months immediately preceding the pandemic, it is possible that some caregivers considered a different and possibly more remote prepandemic time period to compare changes in their involvement in health care activities to postpandemic. Despite these limitations, this is the only study we are aware of to characterize the impact of COVID-19 on caregivers’ health care activities on behalf of patients. Future studies should explore whether caregivers might face personal challenges due to increased responsibilities managing health care activities on behalf of patients since the pandemic. The COVID-19 pandemic has made caregiver assistance in navigating the health care system even more critical for people with chronic conditions and disabilities. Targeted provider and health system efforts can provide caregivers the ability to assist patients in accessing the care that they need.
Public Significance Statement.
This study suggests that during the COVID-19 pandemic, many family caregivers have provided greater assistance with health care activities to patients with chronic illness and disability. These findings highlight the need to identify patients’ involved caregivers and ensure that they have the information and resources needed to assist patients adapting to changes in health care access.
Acknowledgments
This work was supported by a Grant from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR Grant 90RTGE0002-01-00) awarded to Ann-Marie Rosland. NIDILRR is a center within the Administration for Community Living (ACL), Department of Health and Human Services (HHS). Wagahta Semereis was supported by a National Center for Advancing Translational Sciences, National Institutes of Health Award through UCSF-CTSI (KL2 TR001870) and an Agency for Healthcare Research and Quality award (K08HS27844). Dean Schillinger is supported by National Institute of Diabetes and Digestive and Kidney Diseases grant P30 DK092924.
The NIDILRR, ACL, and HHS, did not have a role in data collection, analysis, or writing of the manuscript. The contents and views in this article are those of the authors and should not be construed to represent the views of NIDILRR, ACL, or HHS.
Study concept and design: Wagahta Semere, Lena K. Makaroun, Scott Beach, Ann-Marie Rosland. Acquisition of subjects and/or data: Scott Beach. Analysis and interpretation of data: Wagahta Semere, Scott Beach. Preparation of the manuscript: Wagahta Semere, Lena K. Makaroun, Scott Beach, Dean Schillinger, Ann-Marie Rosland.
We thank Janet E. Schlarb, at the University of Pittsburgh Center for Social and Urban Research for her contributions to data analysis for this study.
Footnotes
The authors have no conflicts of interest to disclose.
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