Cancer Caregiving and Health Information Technology: An Analysis of the Health Information National Trends (HINTS) Survey

Purpose: In this paper, we explore how health technology use impacts informal caregivers’ health and how sociodemographic factors are related, using the Health Information National Trends Survey (HINTS). Methods: Data for this study were obtained from the National Cancer Institutes’ Health Information and National Trends Survey (HINTS 5, Cycle 2, 2018). Participants for the current study were chosen based on their response to one question related to their caregiving status. The sample size was 483 respondents. Variables of interest included caregiver relationship type, general technology use, portal use, and overall health status. Results: The results indicate that there was not a signicant difference of caregiving role on portal usage, [F(5,99) = .975, p = .44, η 2 = .049], and technology use [F(7, 462)=2.625, p=.01]. This demonstrates that those caregiving for a child are more likely to use technology for health related issues. There was not a signicant effect of portal use on caregiver health. However, there was a signicant effect of technology use on overall health (t = 2.074, p=.04). There was also a signicant effect of demographics on general technology use [F(7, 434)= 14.858, p < .001]. Demonstrating as education and income increases, technology use also increases, and as age increases technology use decreases. Conclusion: This study armed that demographic inequalities can negatively impact technology and portal use, which could reduce the burden on caregivers. Therefore, it is important to work to engage cancer patients and their caregivers with technological support and resources.


Introduction
Approximately 25 percent of US adults, 18 and older, participate in some type of informal caregiving, and this percentage is likely to increase as the population continues to age and need greater assistance [1]. It is expected there will be 71 million people over the age of 65 by 2030, meaning the number of people over the age of 65 will double from the year 2000 to 2030 [1]. However, caregiving is not only needed for aging adults, but also for young adults and children with chronic illness [2,3] and disabilities [4]. Caregiving requires a great deal of responsibility and can have negative impacts on the caregiver such as depression and anxiety [7,8,9,10,11]. This has been found to be especially true for those who take care of loved ones with cancer in comparison to other health conditions like diabetes [5]. Cancer caregivers have reported feeling economical, physical, emotional, and psychosocial burdens [7]. Finding ways to support caregivers is critical to improving their overall wellbeing. Health technologies have been shown to be one effective way of improving caregivers' perceptions of the burden of caregiving [12]. This paper examines technology use among cancer and other caregivers using data from the Health Information National Trends Survey (HINTS).

Caregiving
Due to this caregiving burden, caregivers are relying more and more on technology for assistance in caring for their loved ones [21]. Yet there remain limitations on the use of these technologies. There is also evidence that the demographic characteristics of caregiving individuals affect how often they are able and willing to use technology for health-related purposes. Characteristics such as race, ethnicity, English language pro ciency, and socio-economic status have all been implicated as possible barriers to technology adoption [32,33,34,35,21]. This study attempts to investigate an adjacent set of questions.
What remains unknown is if there a difference in overall technology use depending on caregiver role (i.e. caregiving for a child/parent/spouse). Therefore, the objective of this paper is to explore the relationship of caregiving, demographics of caregivers and impacts of technology. Our research questions include, does overall technology use a) predict and b) moderate the overall health status of caregivers? And does (a) age, (b) marital status, (c) race/ethnicity, (d) income, or (e) gender predict the use of health technologies of caregivers?

Method Study design and sample
Data for this study were obtained from the Health Information National Trends Survey 5 (HINTS 5 Cycle 2), which was collected in 2018. The survey was created by the National Cancer Institute to gather information on health-related trends and patterns for US citizens. The HINTS survey was completed through a mailed questionnaire to a nationally representative US sample through a random selection of respondents. The HINTS survey was completed by 3,504 respondents [36].
Participants for the current study were chosen based on their response to one question related to their caregiving status. Those who indicated they were not caregivers or failed to answer the question (i.e., missing data) were removed from the sample. A respondent was characterized as a caregiver if they indicated they cared for either a Child, Parent, Spouse, Another Family Member, Friend, or some combination of these roles. Most respondents were caring for either a Child (23.2%), Parent (25.9%), Spouse (17.2%), or Another Family Member (10.6%). The sample consisted of 483 respondents. The majority of those were White (66%), females (65.6%), who had at least some college education or more (71.8%), and were between the ages of 40 and 70 years old (66.9%).

Outcome variable
The technology use variable was created using questions B5a-g, see Figure 1. Example items include, "In the past 12 months have you used a computer, smartphone, or other electronic means to look for health or medical information?" and "In the past 12 months have you used a computer, smartphone, or other electronic means to track health care charges?" Response options included 1 = Yes, 2 = No. These items were selected as indicators of the respondents owning and using a type of personal technology device for health-related purposes.
The portal use variable was created using questions D8a-g and D9a-e, see Figure 2. Example items include, "In the past 12 months have you used your online medical record to request a re ll of medications?" and "Do any of your online medical records include a list of health/medical problems?" Response options included 1 = Yes, 2 = No. These items were selected as they were indicators of respondents using a health portal for various health activities.
Overall health status was measured using question G1: "In general, would you say your health is…" Response options included 1 = Excellent, 2 =Very good, 3 = Good, 4 = Fair, and 5 = Poor.

Sample characteristics
Demographic variables included age, sex, occupational status, marital status, education level, race/ethnicity, and income.

Statistical methods
Statistical analyses were conducted using SPSS (v.26). Descriptive statistics were conducted to summarize the sample characteristics and study variables. Between-group differences based on caregiving status were explored for research question one using an analysis of variance (ANOVA) test. To compare each of the caregiving conditions to every other condition, Tukey HSD tests were run. In order to perform the post-hoc tests, the caregiving status variable was re-coded to indicate single caregiving relationships, two relationships into a combined variable, and three or more types of relationships in a separate variable. Linear regression was used to test the relationships in research questions two and three. In addition, moderation analysis was conducted using PROCESS v3.3 [37] to test the moderation of a) portal use and b) technology use on the relationship between caregiver role and overall health. For the technology use variable created using questions B5a-g, we created one variable by adding all of the items together recoded the items and the HINTS data set coded each item 1= yes they used a technology and 2= no they did not use the technology (i.e. for the average variable we created, a higher number means lower technology usage).For the portal use variable created using questions D8a-g and D9a-e, we created one variable by adding all of the items together, a higher number indicating lower usage.

Sample characteristics
This analysis included individuals who completed the portion of the HINTS survey for caregivers (n = 483). The caregivers were most often caring for either their parents (25.9%) or their children (23.2%), see Table 1 for all participant demographics and for caregiving role frequency.  Table 2. We also explored if health portal use and technology use moderate the relationship between caregiving status and overall health. Results suggest that health portal use nor general technology use were not signi cant moderators of the caregivers' health.  Table 3. Results suggest a negative, signi cant relationship between education and technology use (β = -.034, t = -4.627, p < .001), and income and technology use (β = -.017, t= -4.973, p < .001), which indicated that as education and income increases, technology use also increases. Results also suggest a positive, signi cant relationship between age and technology use (β = .005, t= 5.631, p< .001), and gender and technology use (β = .018, t = 2.508, p = .01. These results indicate that as age increases, technology use decreases; single individuals have increased technology use; and females have increased technology use. See Table 4 for the means and standard deviations for demographics on health portal and technology use.

Discussion
We used a nationally representative, population-based survey to explore health portals use and technology use among caregivers as well as other demographic considerations. These results show the type of caregiving role does not have an effect on health portal use. However, the type of caregiving role in uences general technology use for health. Speci cally, results show that those caregiving for a child compared to another family member are more likely to use technology for health purposes. It is possible that caregivers of children may be younger than those caring for another family member, and age has been found to be a signi cant driver of more technology use in general [3,38]. Future research should consider why this did not hold true for health portals usage.
Health portals use does not appear to predict a caregivers' overall health. Health portals use may not be as burden-reducing for caregivers due to the regulatory barriers that do not allow for easy access to the loved one's records making it harder to access the health portal initially [30]. Additionally, health portals can be di cult to navigate, and every hospital group requires the patient or caregiver to create a new account, which can be especially challenging for cancer caregivers as they already face a greater burden than other caregivers [5]. This lack of interoperability of health portal systems is a barrier to their widespread adoption by caregivers [39]. Additionally, there were no signi cant effects of demographic characteristics on health portals use. Although health portals use for in-home caregivers has increased [40], it remains a barrier as use requires knowledge and English language pro ciency. These barriers may be even more deleterious for already overwhelmed cancer caregivers [5,34,41].
General technology usage, like the use of a smartphone or computer, does not require such speci c knowhow and may reduce caregiver burden due to stress reducing information seeking attributes [3]. This supports other ndings in that the use of smart phones and mobile devices are very popular among all caregivers, but especially those over the age of 65 who are less likely to feel comfortable using technology [30]. For technology use, age, education, income, and gender had a signi cant effect. A major barrier to all technology use, including general technology use and health portals, is income and income has shown to impact technology adoption [2]. Level of education appears to also be in uential akin to income. Furthermore, caregivers in this study used general technology for health at a greater frequency than health portals, which could explain why health portal use was not a signi cant predictor. Caregiving technologies may reduce burden, which may allow caregivers the ability to focus on their own health and well-being [3]. This can be especially true for cancer caregivers where studies have shown that health information technology can help reduce caregiver burden and increase feelings of empowerment [24]. Although health portal use and technology use are different and are used with different frequency, it is likely that both general technology and health portals are critical to aid caregivers [42].

Limitations And Strengths
As with any study, there are limitations that need to be acknowledged. First, the data relies on self-report and are cross-sectional so we cannot make any causal inferences. However, a major strength of this study is the use of a nationally representative dataset to begin exploring the impacts of health portal use and technology use among the various types of caregivers, which has been relatively understudied.
Additionally, the vast differences in the use of health portals by health systems and physician o ces were not measured through this survey. However, this does not mean that the results are inaccurate, rather the expense of using a secondary source of data of a nationally representative sample.
Furthermore, many of the questions had yes/no responses, which does not provide a level of detail nor understanding that might help further understand the relationships between caregiving, technology use and overall health status.
This study provides an initial understanding of how health technology might be able to improve the caregiving experience for individuals. Future work can provide a further elucidation of the types of technology used and their impact on the perceptions of caregivers. Additionally, this work was unable to shed light on the social aspects of technology -the opportunity of giving and receiving social support -and that impact the overall health of the caregivers, which is also hypothesized to be critical. For instance, there have been past studies that have provided evidence that caregivers are very active on social media platforms [24].

Conclusions
This study examined the potential impact of health technology use and caregiver's health using a secondary source of a nationally representative sample. The data demonstrated that some health technologies do improve the overall health of caregivers. However, legal and technical barriers remain, which makes the use of health portals burdensome. This study also a rmed that inequalities related to race, gender, education, and income level all negatively in uence the amount that technology and health portals could reduce the burden on caregivers allowing them to lead a ful lling and healthy life. By understanding the needs of caregivers and how those needs differ depending on who they are providing care for, technologies can be tailored to better meet those needs.

Declarations
Funding: This research was not funded Con icts of interest/Competing interests: The authors report no con icts of interest Availability of data and material: The data is publicly available