HINTS is a nationally representative survey administered by the National Cancer Institute since 2003. The HINTS target population is adults aged ≥18 years in the civilian noninstitutionalized population of the United States. HINTS 5 (Cycle 1) was conducted from January 25, 2017 to May 5, 2017. The questionnaire included a series of questions about caregiving.

The sampling frame consisted of a database of addresses used by the Marketing Systems Group to provide random samples of addresses. The questionnaire was administered as a mailed survey; a total of 4 emails were sent out. All households in the sample received the first mailing and reminder postcard, while only nonresponding households received the subsequent survey mailings. Details on sampling strategies and survey design are available in the HINTS 5, Cycle 1 methodology report [12]. The final weighted response rate was 32.39% (3240/13,360).The final response rate was calculated using the RR2 formula of the American Association of Public Opinion Research.

Data analysis was performed using SAS/STAT software, Version 8 of the SAS System for Unix. Copyright (2018; SAS Institute Inc). First, univariate analyses were conducted for the sample, including the descriptive statistics only for participants who identified themselves as caregivers (Table 2). Next, bivariate analyses were conducted to examine the relationships between the variables of interest, including comparisons of the measures between caregivers and noncaregivers (Tables 1, 2, and 3). Finally, to understand the experience of caregivers seeking health information, 2 multivariate linear regression models were built using respondents who identified as caregivers—one with the measure of confidence in seeking health information as the dependent variable, and one with the difficulty seeking health information scale measure as the outcome (Table 4); all models were adjusted for. For all analyses, replicate weights were applied to account for the complex sampling design and derive representative estimates.

Table 1 summarizes the descriptive statistics for demographic and key caregiver variables. Caregivers (n=391) comprised 237 (58.4%) females and had an average age of 51.8 (SD 1.60) years. Among the 391 caregivers, 166 (51.4%) were employed, 266 (66.8%) were married, 251 (69.4%) were white, 313 (87.3%) were non-Hispanic, and 327 (84.7%) were born in the United States. The education level of the 391 caregivers was as follows: 98 (31.0%) had a high school education or less, 131 (33.9%) had some post-high school education, and 162 (35.1%) had a college degree or more.

Table 2 summarizes descriptive information on caregiver relationship and activities. Of the 391 caregivers, 148 (41.4%) reported that they provide care for a parent or parents, 92 (20.5%) provided care for a spouse, 50 (10.4%) provided care to another family member, and 24 (4.1%) provided care to a friend or nonrelative. In addition, 239 (63.6%) provided care to a person with multiple conditions and 136 (32.8%) reported providing <5 hours of care per week.

Caregivers reported looking for health information (from any source) more than noncaregivers (Table 3). The internet was the most frequently used source of health information. More noncaregivers (1401/1932, 72.52%) reported using the internet in their most recent search for health information compared with caregivers (181/278, 65.1%). Caregivers more frequently reported that the last time they looked for health information was for both themselves and someone else, while most noncaregivers reported looking for health information for themselves only. Caregivers and noncaregivers reported low difficulty in seeking health information and moderate levels of confidence in obtaining information on medical topics.

Among respondents who reported using the internet, caregivers used a computer, smartphone, or electronic means for health information–seeking activities more often than noncaregivers (Table 3). Compared with noncaregivers, caregivers more frequently use the internet to find health information for others (264/391, 71.1%), and make appointments with a health care provider (166/391, 46.8%).

In multivariable models predicting difficulty in health information seeking, we found that caregivers who were born outside of the United States reported greater difficulty seeking health information (beta=.42; P=.02; Table 4). In multivariable models predicting caregivers’ confidence in health information seeking, we found that nonwhite caregivers (beta=−.33; P=.03), those with less education (beta=−.35; P=.02), those with private insurance compared with public insurance (beta=−.37; P=.01), and those without a regular health care provider (beta=−.35; P=.01) had lower confidence in seeking health information. Caregivers with higher income had greater confidence (beta=.12; P ≤.001) in seeking health information (Table 4).

Caregivers sought health information for themselves and used computers, smartphones, or other electronic means to find health information more frequently than noncaregivers. Caregivers born outside of the United States reported greater difficulty seeking health information, whereas caregivers that were nonwhite, less educated, privately insured, and without a regular health care provider reported lower confidence seeking health information. Caregivers with higher income reported more confidence seeking health information.

This study supports the notion that family caregivers are among the most engaged stakeholders of the health care system, and avid health information seekers. The internet has shifted how caregivers can find information and engage in the care of their loved one. Within our sample, more noncaregivers reported using the internet in their most recent search for health information compared with caregivers. This finding is likely attributed to the fact that caregivers are highly engaged in information seeking through a variety of resources (eg, doctors, books, and clinic brochures) of which the internet is but one important resource. Compared with noncaregivers, caregivers in this study more often used a computer, smartphone, or another internet device to find health information for others and make appointments with a health care provider. Our results parallel research that indicated caregivers are more likely than patients to report using the internet to perform health management activities [13]. These results support a growing number of Web-based caregiver interventions, which have found some positive response in reducing depressive symptoms, anxiety, and stress or distress among caregivers of adults with chronic health conditions [14]. Given the high rates of Web-based health information seeking, our findings suggest that caregiver interventions and services delivered on Web-based platforms are likely to be acceptable to caregivers who regularly use smartphones and electronic devices. Though the format of Web-based interventions may be acceptable, high-quality studies are required to identify their effectiveness. Consistent with previous research, caregivers in this study reported seeking information for themselves and others, indicating a dual purpose behind health information–seeking behavior [6]; this differs from noncaregivers, who mostly sought health information for themselves. A logical application of this finding is in the development of caregiver education tools and resources.

Despite high rates of health information seeking, this study highlights important differences in how caregivers appraise the experience of seeking health information and what characteristics account for these differences. As more caregiver support services are adapted and delivered using a Web-based format, these disparities are critical to understanding what subgroups of caregivers may be more or less likely to accept Web-based services and interventions. We found that nonwhite caregivers were less confident in seeking health information. Likewise, previous research has found racial differences in health information seeking among patient populations. Latino patients, for example, have been markedly less likely than white patients to seek health information and less likely to use it when they talked with their doctors [15].

While we found no differences in difficulty with health information seeking based on caregiver race or ethnicity, we did find that caregivers born outside of the United States experienced greater difficulty seeking health information. It may be that caregivers born outside of the United States have different cultural views on health, and that generic health information does not adapt to these beliefs [16,17]. Moreover, caregivers born outside of the United States may be unfamiliar with the complexities of the US health care system. It is possible that these findings reflect larger issues around immigration, especially access to resources for immigrants entering the United States. Caregivers are a particularly vulnerable subgroup of the immigrant population who experience barriers to accessing resources and services [18]. With an influx of recent national and state policies that target family caregivers (eg, RAISE Caregiver Act and the CARE Act), our results suggest that there may be a policy-level need to address the intracultural variations in information gathering among family caregivers [19]. Moreover, internet-based caregiver services, advocacy groups, and health care providers should ensure that health information is presented in ways that do not exclusively embrace US ideals. Furthermore, ethnic differences in caregiving occur at multiple levels (intrapersonal, interpersonal, and environmental); therefore, it is critical that resources for health information acknowledge these differences [20].

We found that caregivers with private insurance were less confident in seeking health information compared with public insurance. These findings align with a conceptual model of caregiving that positions health insurance coverage as an external variable that can facilitate or inhibit the caregiving, enhancing, or hindering the chances of success [21]. Likewise, caregivers without a regular health care provider were less confident in seeking health information. Caregivers who have an established relationship with their health care provider may benefit from these interactions, and the engagement with providers. While caregivers’ interactions with providers can range from collaborative to disconnected, regular contact with a provider appears to play an important role in confidence seeking health information [22]. In addition, we found that caregivers with less education were less confident in seeking health information. This pattern is congruent with previous findings that showed individuals with lower education were less likely to seek health information and had lower confidence in their ability to obtain health information [23]. Our results support the notion that it is critical to assess the role of socioeconomic status in caregivers’ health information–seeking confidence and improve the delivery of health information for vulnerable caregivers. As caregivers are highly engaged in seeking information for their loved ones, these findings support initiatives, such as shared access to medical records, patient information, and Web-based patient portals, which could engage and educate caregivers [24]. It is critical to not only give caregivers access to systems but also ensure that these systems are easy to access and that caregivers are confident in navigating these systems. Moreover, it is critical to developing systems with continuous input from caregivers as stakeholders [25].

This work should be viewed within the context of several limitations. First, our data are cross-sectional. Therefore, our results are not intended to infer causality. Second, the survey obtained a relatively low response rate, which may have introduced some nonresponse bias. Finally, there are limitations to evaluating the caregiver status and experience through a population-based survey, which was unable to go into depth about caregiving experiences.

This study provides important insight into how caregivers seek information. It also identifies caregiver characteristics that contribute to differential appraisals of health information seeking. Caregivers actively seek health information for themselves and others and primarily use the internet to find health information. However, important disparities exist among caregivers in how they appraise health information seeking. Notable differences in the difficulty and confidence around health information seeking exist between caregivers, indicating the need for more attention to the socioeconomic status, gender, and immigration status. These findings may serve to guide efforts to optimize caregivers’ health information–seeking experiences.