This paper reports findings from 2 sequential surveys of individuals who support family members and friends with chronic illness. The surveys for this study were administered by Knowledge Networks, a research firm that maintains a large, nationally representative survey panel of adults. Knowledge Networks’ panel is very similar to the United States population with respect to race/ethnicity, gender, educational attainment, and income [11]. In return for their participation in the panel, members receive Internet access and computing equipment at no cost [12,13].

For this study, we identified potential participants using data from a previous study (Wave 1: January 26 to February 16, 2010) [14]. We identified 748 individuals from the Wave 1 cohort who (1) had an adult family member or friend with a chronic illness (including diabetes, chronic heart disease, chronic lung disease, arthritis, and/or depression), (2) lived apart from this person for more than half of the year, and (3) reported a high willingness to help this person with his or her health. Of note, individuals whose care recipients were living in a long-term care facility or required assistance with basic activities of daily living were excluded from the Wave 1 cohort because the focus of this earlier study was on support for independent and ambulatory adults with a chronic illness [14].

For the current study (Wave 2: January 20 to February 21, 2011), we invited the 604 Wave 1 participants who were still active Knowledge Networks panelists to complete a follow-up survey about their use of health information technology to support their out-of-home care recipient (Multimedia Appendix 1). Of the 512 individuals who completed a screening questionnaire (response rate 84.8%), 452 reported that they were still in touch with—and living apart from—the care recipient whom they had identified in Wave 1. In this paper, we report survey findings for the subgroup of 316 respondents who we identified as active out-of-home caregivers (ie, they reported engaging in 1 or more out-of-home caregiving activities, described subsequently, to support their care recipient) (Figure 1). Specifically, we report these respondents’ use of, interest in, and barriers to health information technology for out-of-home caregiving activities, and we describe caregiver and patient characteristics associated with technology use.

We first examined rates of health information technology use and interest in technology for specific caregiving activities. We then used multivariable logistic regression models to examine the association between out-of-home caregiving intensity and a respondent’s use of technology for caregiving activities, adjusting for comfort with technology, as well as caregiver’s age, sex, race/ethnicity, education, income, and health status. We constructed a similar model to investigate whether specific care recipient characteristics were associated with a caregiver’s use of technology. For this model, we included the care recipient’s age, health status, incidence of hospitalizations, and incidence of emergency room visits over the previous year, the presence of unmet health or health care needs, the care recipient’s geographic distance from the caregiver, and whether the care recipient uses the Internet. Finally, we examined common barriers cited by technology-using and technology-nonusing caregivers that prevent them from using technology (or using it more frequently) for caregiving activities.

We used Stata 12.0 (StataCorp LP, College Station, TX, USA) to perform all analyses. Rates of item-level missing data were less than 8% for all covariates used in analyses. Regression diagnostic procedures yielded no evidence of multicollinearity in any of the regression models. Datasets were deidentified before receipt from Knowledge Networks. Both waves of the study were classified as exempt by the Institutional Review Board at the University of Michigan.

In this national survey of out-of-home caregivers for a chronically ill family member or friend, more than one-third (34.5%, 109/316) reported using health information technology to facilitate caregiving activities, and technology use was significantly more common among caregivers providing more intensive support. Interest in technology for caregiving far exceeded active use, suggesting an opportunity for technology innovation and expansion to better meet the needs of these individuals and their care recipients. Our findings also highlight important information-sharing barriers that can be addressed by health systems to more fully engage out-of-home caregivers in the health care of chronically ill patients.

According to a recent Pew Internet survey, close to 80% of caregivers now have access to the Internet, and approximately two-thirds of online caregivers report that their last Internet health information search was on behalf of another person, suggesting that use of technology to support informal caregiving activities is pervasive [17]. Few studies, however, have investigated technology use and its desirability among caregivers who live apart from their care recipients. A recent National Alliance for Caregiving report revealed that individuals providing care from a distance were more likely than their in-home counterparts to report that technology could make them more effective as caregivers [18]. Our study builds on this report by describing specific technology applications that are used most frequently by out-of-home caregivers, and by identifying barriers to technology use among these individuals.

One technological feature of great interest to out-of-home caregivers in our study (both active technology users and technology nonusers) is the ability to interact with their care recipient’s health care system, for example to communicate with a provider or monitor laboratory results. Many of these out-of-home caregiving technology functions could potentially be performed through a patient portal or electronic personal health record (PHR) [19,20]—tools that are increasingly available through various health care systems, including Kaiser and the Veterans Health Administration. Several studies have documented growing interest in adapting PHRs to enhance information sharing among patients, their caregivers, and their network of health care providers. For example, in a study of more than 18,000 users of the Veterans Affairs’ My HealtheVet PHR, approximately 80% expressed interest in sharing access to their record with a family member, caregiver, or provider outside the Veterans Affairs system [21]. Other studies indicate that caregivers are similarly interested in having remote access to their care recipient’s electronic health information [22,23].

Unfortunately, despite patient and caregiver preferences for information sharing, many health care systems impose barriers that limit such communication. In our survey, nearly half of technology-using caregivers (48.6%, 53/109) indicated that health system privacy rules impede their ability to use technology for out-of-home caregiving activities. Patients who wish to share their electronic health information are frequently limited in terms of the specific individuals to whom they may authorize access, and the process is often cumbersome and may require legal documentation [24-26]. Although these regulations stem from reasonable data security considerations, when too restrictive, they may prevent patients from using PHR systems in the ways they find most valuable [27]. Our findings suggest that health systems should consider delegation applications that enable patients to easily share their electronic health information with caregivers.

An additional barrier to technology use for caregiving was unfamiliarity with available programs, despite the fact that Web-based and mobile applications designed specifically for caregivers abound [28,29]. A previous survey of caregivers (both in-home and out-of-home) identified other obstacles to caregivers’ use of technology, including perceived cost (37%) and potential resistance by the care recipient (20%) [18]. These findings suggest that current technologies are either not adequately disseminated to or are not meeting the needs of caregivers and their care recipients, and that the implementation of existing caregiving technology would benefit from a greater user-centered focus.

It should be noted that we used a broad definition of caregiving for this study, including all individuals who engage in at least 1 of 5 common out-of-home caregiving activities. Historically, the term caregiver has been used to refer to individuals who provide fairly intense and task-oriented care [9], but there is growing awareness that many caregivers do much more than assist with basic activities of daily living. Caregivers commonly help with chronic illness management tasks, such as medication adherence, tracking of blood pressure or sugar, communication with patients’ health care providers, and health system navigation [30,31]. Because these tasks are not reliant on physical proximity, they may be particularly amenable to support through technology.

Several limitations to our findings warrant discussion. First, although Knowledge Networks maintains a nationally representative panel, the subset of participants who met our criteria might not represent all out-of-home caregivers for adults with chronic illness. In addition, because all of Knowledge Networks’ panelists have Internet access, either independently or as compensation for their panel participation, rates of technology use for caregiving may be higher among survey respondents than in the general population (where 78% have Internet access) [32]. Second, the asynchronous nature of our surveys may have resulted in certain characteristics of survey respondents (eg, caregiving intensity) and care recipients (eg, health status) changing between Wave 1 and Wave 2. Third, we relied exclusively on self-reported data, which could have resulted in recall bias, especially with regards to caregiving intensity and care recipients’ health care utilization. Fourth, our assessment of technology use for out-of-home caregiving may be an underestimate because (1) we queried survey respondents about their use of technology to care for only 1 out-of-home care recipient even if they provide care to multiple individuals, and (2) our survey did not include some emerging caregiving technologies, such as telehealth, videoconferencing, and mobile applications. Finally, this study focused on caregiving for chronically ill adults who are independent in basic activities of daily living; thus, findings cannot be generalized to caregivers of children or individuals with severe cognitive or functional impairments, such as dementia.

In conclusion, our study suggests that health information technology use is common among out-of-home caregivers for adults with chronic conditions, especially among those providing more intensive care. Both active users and nonusers of technology indicated high levels of interest in expanding their use of technology and adopting new applications for caregiving purposes. The gap between interest and use, as well as barriers cited by survey respondents, should guide technology development and regulations to better address the needs of out-of-home caregivers. Additional investigation is needed to further elucidate specific technology features that are of greatest value to out-of-home caregivers and their care recipients, and to identify the applications that most improve chronic disease management and clinical outcomes. Out-of-home caregivers, armed with remote access to patient health information and their health care team, represent a promising opportunity to enhance chronic disease care, although we need to develop thoughtful implementation procedures and policy to ensure that we achieve this potential.