This is a cross-sectional study using data from the Health Information National Trends Survey (HINTS, 2017) [33] Version 5, Cycle 1, a nationally representative survey of civilian, noninstitutionalized adults aged ≥18 years in the United States. This survey is conducted by the National Cancer Institute (NCI) and assesses Americans’ access to and use of health information. The HINTS was reviewed and approved by the Institutional Review Boards of the NCI Special Studies and the main contractor (Westat, Inc). Surveys were distributed by mail between January 2017 and May 2017. Of 13,360 surveys mailed, 3285 participants returned surveys (response rate, 32.4%). Additional methodology details are provided in the Methodology Report [34].

This analysis exclusively reports data from 391 participants who self-identified as a caregiver for an adult by answering affirmatively to the item “Are you currently caring for or making health care decisions for someone with a medical, behavioral, disability, or some other condition?” Caregivers could indicate that they were providing care to a spouse, parent, another family member, or another close individual; caregivers could select multiple responses to indicate they provided care for multiple individuals. Informal caregiving surveys typically focus on informal care to adults, given the anomalous, age-discordant nature of this caregiving [1,8]. Informal caregiving for a child is typically assessed with a denotation of atypical care provision, for example, “this kind of care is more than the normal care required for a child” [1]; no such specification was provided in the HINTS survey. As such, for this analysis, participants exclusively reporting caring for a child were not included (n=189); however, individuals endorsing care for both a child and an adult were included (n=64).

The specific wording of all measures reported in this study is available on the Web [35].

Table 1 presents sample characteristics for participating caregivers’ sociodemographic, health, and caregiving factors. Caregivers’ average age was 58 (range: 24-101) years, 55.0% (215/391) of the sample self-identified as non-Hispanic white, 64.5% (252/391) identified as female, and 21.0% (82/391) reported having children living in their home. Caregivers were most commonly (181/391, 46.3%) caring for a parent. Aging-related health issues (165/391, 42.2%) were most commonly reported as a reason that the care recipient required assistance. Most caregivers reported some college education or more (293/391, 74.9%), and lived in a metropolitan county (330/391, 84.4%). Most caregivers endorsed good health or better (319/391, 81.6%) and minimal distress (251/391, 64.2%). Caregivers most commonly reported spending ≥5 hours/week providing care to the care recipient(s) (228/391, 58.3%).

Table 2 provides detailed descriptions of participating caregivers’ internet use variables. Most caregivers indicated that they had used the internet (303/391, 77.5%); of these, most reported that they accessed the internet from a computer at home (267/391, 88.1%) and/or a mobile device (252/391, 83.2%). Among those with a tablet or smartphone, a similar percentage of caregivers endorsed having a wellness mobile app (171/391, 43.7%) versus not having one (165/391, 42.2%). Most caregivers reported having used electronic means to access health information for themselves (286/391, 73.1%) or someone else (264/391, 67.5%) in the past year; a few reported having communicated with a doctor using the internet or email (148/391, 37.9%). Furthermore, two-thirds of caregivers (258/391, 66.0%) endorsed mostly trusting medical information from the internet.

Table 3 presents results for weighted chi-square tests comparing internet use generally (Use Internet) and internet use by home computer (Use Internet: Home) or mobile device (Use Internet: Mobile). Older age, less education, and metropolitan residence were associated with a lower likelihood of endorsing internet use. Among those caregivers endorsing internet use, worse general health was associated with a lower likelihood of accessing the internet from home computer, and older age was associated with a lower likelihood of accessing the internet from a mobile device.

Table 4 presents results for weighted chi-square tests comparing a wellness mobile app use (Wellness App) and comparing electronic health information access for one’s self (Information: Self) or another person (Information: Other). Among those owning a tablet or smartphone, older age was associated with a lower likelihood of having downloaded a wellness app. Only older age was associated with a lower likelihood of using the internet to access information for one’s self. Furthermore, older age and less education were associated with a lower likelihood of using the internet to access information for someone else.

Table 5 presents results for weighted chi-square tests, electronic communication with a doctor (Talk with doctor), and trust in health information from the internet (Trust internet information). Older age and worse general health were associated with a lower likelihood of electronic communication with a doctor. Worse general health was associated with less trust in health information from the internet.

Weighted chi-square tests of independence were repeated for the expanded Use Internet item (ie, answering affirmatively to any of the items: Information: Self, Information: Other, Talk with Doctor, and/or Use Internet) that accounted for caregivers’ potential misidentification as noninternet users. Results indicated a comparable pattern of findings between the original Use Internet and expanded Use Internet variables—older age (F_1,49=5.02, P=.03) and lower education (F_1,49=4.37, P=.04) were associated with lower reported internet use; general health (F_1,49=2.42, P=.25), distress (F_1,49=1.68, P=.20), and caregiving burden (F_1,49=3.74, P=.06) were not associated with the reported internet use. The only discrepant finding for the expanded Use Internet variable compared with the original Use Internet variable was that rurality was no longer significantly associated with internet use (F_1,49=2.42, P=.13).

Using data from a US nationally representative survey, this paper presents novel evidence regarding how internet use, both generally and specifically for accessing health-related information, differs among informal caregivers according to certain key sociodemographic, health, and caregiving-related factors. Overall, the internet use, both by home computers and mobile devices, was common among caregivers, as was accessing health information for themselves and other people through the internet. The proportion of caregivers in this study who endorsed ever using the internet (303/391, 77.5%) was lower than prior estimates of internet use among the general population (89%) [15] or among caregivers (86%-92%) [8,9], although adjusting to include individuals who indicated any electronic access of health-related communication or information resulted in more comparable rates (342/391, 87.5%). The use of wellness mobile apps and communicating with a doctor’s office by the internet were less common among caregivers. Older age, lower educational attainment, and poorer general health were associated with less frequent internet activity, as has been found among the general population [15]. Furthermore, rurality, distress, and caregiving burden were generally not related to internet activity.

From this survey data, caregivers aged ≥65 years tended to report lower overall internet use, with an estimated 40.4% of the population of older caregivers identifying as noninternet users, compared with 13.7% of caregivers under the age of 65 years. Among internet users, older caregivers did not differ from younger caregivers in terms of home computer internet access but did endorse an approximately 10-fold lower likelihood to access the internet by a mobile device. Growth trends in mobile phone use are highest among older adults [38], however, suggesting the potential longer-term utility of mobile phones as a tool for enhancing older caregivers’ well-being [13,39]. Fewer older caregivers reported having a wellness “app” downloaded, searching for health- or medical-related information, and communicating with a doctor’s office using the internet. These findings regarding the disparity across the types of internet use by age are consistent with prior studies of both the general population [15,40] and caregivers [8], in which older adults are less likely to use the internet either in general or for health-related purposes. Low-barrier caregiving-related resources, such as those delivered by the internet, may be especially important for older caregivers, being particularly vulnerable owing to frequently having less help with caregiving, more medical problems of their own, and more barriers to accessing traditional in-person resources [1,17,18]. Importantly, older caregivers report being equally as interested in internet-based resources to assist them in their caregiving role as were younger caregivers [8], meaning older adults’ lower internet use should not necessarily be interpreted as a lack of demand among this group. Interventions designed to enhance older caregivers’ internet skills and digital literacy may help increase reach and benefit of internet- and technology-based health resources to this rapidly growing and especially vulnerable subset of informal caregivers (for review of similar programs, see Ref. [41]).

Caregivers reporting fair or poor overall health, another vulnerable caregiving population, were equally as likely to report internet use as caregivers reporting good or better health, yet reported 6-fold lower access from a home computer. In terms of dissemination of caregiver resources by the internet, ensuring that Web-based resources are compatible with both computer and mobile browsers will ensure the broadest reach of such resources. Many programs developed for caregivers, however, are not cross-platform appropriate (eg, disseminated through a native app vs a mobile-friendly website) [10-14], which would limit reach across caregivers. In addition, caregivers with poorer health were less likely to have communicated with a doctor or doctor’s office through the internet and were twice as likely to distrust health-related information from the internet, despite being equally likely to access health information online. Notably, the HINTS survey did not qualify the item assessing trust in health information from the internet in terms of website reputability. It may be the case that caregivers in poorer health have had more experience finding “bad” information about health conditions online, thus expressing less trust in this modality. Overall, establishing reputability of internet- and technology-based caregiver resources, by ensuring the accuracy of information and creating a professional and appealing user experience, will be important to earn caregivers’ trust and uptake [42].

Contrary to expectations, caregivers living in a rural area were more likely to report internet use than those in metropolitan areas, although this finding did not hold in post-hoc analyses when broadening the internet use variable to account for those potentially misidentifying as noninternet users. The weighted percentage of internet use among the current sample of rural caregivers (90.5%) was substantively higher than prior nationally representative samples of adults living in rural areas (78%) [15], although the unweighted percentage (50/61, 82.0%) was more comparable. Given caregivers in rural areas have less access to traditional in-person health care resources, internet- and technology-based resources may help meet supportive care demand for these caregivers [31]. In addition, caregivers’ internet activity did not differ according to caregivers’ level of distress or caregiving burden. These findings contrast with previous qualitative findings among dementia caregivers, who had described stress and burden from caregiving as factors that interfered with their use of an internet-based intervention [32]. Further research into how caregiving stresses—both objective (eg, time and care tasks) and subjective (eg, perceived burden and impact of caregiving)—affect the uptake and use of internet-based resources will help to ensure the greatest reach and utility of these resources for caregivers who most need them.

This study reports findings from a cross-sectional survey that was designed to capture the attitudes of cancer-related health information from a representative sample of the general US adult population. As such, this survey was not designed to address research questions for this study specifically nor was sampling specifically targeted to family caregivers. Hence, this survey did not ascertain subjective caregiving burden or specific caregiving responsibilities, which may affect caregivers’ motivation or need to access health information by the internet. In addition, it was not ascertained whether caregivers were utilizing the internet specifically to assist them in their caregiving role; however, this has been previously well-described [8], and this study extends the prior research to better understand what subsets of caregivers may be less likely to benefit from caregiver resources disseminated through the internet. Moreover, it should be noted that we analyzed a subset of the overall HINTS 5 cycle 1 sample (N=3285), namely those identifying as informal caregivers to adults (n=391), who were not representatively sampled among the national population of informal caregivers. This may reduce the reliability and generalizability of findings; however, robust analytical techniques that incorporate the complex survey weighting mitigates these concerns. Furthermore, these analytical techniques provide population estimates that are likely to be more representative than most prior research with caregivers, which has tended to disproportionately capture socioeconomically advantaged and non-Hispanic white individuals.

Ultimately, internet- and technology-based education, communication, and intervention hold significant promise to help caregivers be more active and connected participants in their care recipients’, and their own, health care [12,39]. Although findings here suggest older caregivers, those with lower educational attainment, and those in poorer health are less likely to be using existing internet resources, it is not known why these individuals report less frequent use. Potential reasons explaining these discrepancies may include limited knowledge of how to use technology, privacy concerns, costs of technology, lack of awareness of available internet resources, perception that the effort of using such resources would not outweigh potential benefits, or preferring more traditional resources, like print information or communicating with doctors by phone or at clinic appointments. Moreover, little is known about how such resources fit into caregivers’ day-to-day lives or complement existing health care delivery systems [12], factors that may relate to caregivers’ long-term use of and benefit from such tools. Continued research to understand caregivers’ evolving needs, preferences for meeting those needs, and how needs and preferences differ among caregivers is necessary to ensure all caregivers may optimally benefit from internet- and technology-based caregiving resources.

Most caregivers are internet users, both for general purposes and specifically to access health information. Caregivers over the age of 65 years, those with a high school education or less, and those reporting poor health report less internet activity, suggesting these vulnerable caregivers may not be equally benefited by internet- and technology-based caregiver resources without careful consideration of factors that might facilitate their use. In addition, caregivers’ level of rurality, distress, and caregiving burden did not relate to their internet activity, suggesting these factors are not likely to impede caregivers’ access to internet- and technology-based resources. Overall, internet- and technology-based resources to support informal caregivers are likely to have significant reach, yet close attention to the accessibility of such resources by the most vulnerable caregivers must be paid to ensure equal benefit.