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 . 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 . However, caregiving is not only needed for aging adults, but also for young adults and children with chronic illness [2, 3] and disabilities . 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 . Cancer caregivers have reported feeling economical, physical, emotional, and psychosocial burdens . 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 . This paper examines technology use among cancer and other caregivers using data from the Health Information National Trends Survey (HINTS).
Informal or family caregivers are defined as family members, friends or other individuals who assist in the needs of a patient’s healthcare needs without financial compensation . Providing this type of care is a demanding job, that often includes cleaning, making meals, transit to medical appointments, medication dispensing, and a wide range of other necessary tasks . Furthermore, some caregivers — sometimes called the “Sandwich Generation” — are caring for both older parents and their children at the same time, increasing the strain on caregivers .
These tasks have been found to have an impact on the caregiver’s mental and physical wellbeing. Caregiving can cause negative emotional and physical effects [16, 17, 18]. Studies have found that these negative effects can include higher prescription drug use, smoking, poor food choices, and an overall lower self-perceived health [19, 20]. Exploring ways to alleviate the negative impacts on caregivers is critical to their health outcomes and overall well-being. Health information technology has the potential to alleviate some of the negative impacts on caregivers to improve overall health outcomes and well-being.
Health technology and caregiving
Technology has been shown to be one potential method for easing the burden on caregivers . The use of technology by long-distance family caregivers of elderly loved ones can improve social and emotional cognition, allowing for more frequent wellness check-ins and increased communication [21, 22]. Health information communication technologies have been shown to improve decision confidence, reduce emotional strain and caregiver burden . A review of studies focusing on cancer caregiving have shown that health information technology can help reduce caregiver burden and increase feelings of empowerment . Research has demonstrated that health quality and social connectedness can be improved through the use of health technology [22, 25]. Several studies have found that technology use can improve several facets of social support, knowledge, and quality of life, while also decreasing instances of depression and anxiety [3, 18, 26, 27].
Another area of technology is the use of health portals by caregivers to help support their navigation of the healthcare system for the patient. Health portals are online tools where patients can access information about their medical care such as appointments, medical notes, and medication lists. Many older patients do not use health portals , sometimes due to access or literacy issues. However, this is also in part because they are frequently being actively excluded by health care providers who assume they are incapable or unwilling to engage with the technology . This exclusion trickles down to those elderly patients’ family caregivers, barring them from benefiting from the usage of these technologies . The use of health portals by caregivers has been shown to be beneficial especially to those individuals who are unable to coordinate their own care; however, their use by informal caregivers is limited by HIPAA regulations . This can mean that caregivers have a difficult time accessing technology that can reduce their caregiving burden.
Influence of demographics
Due to this caregiving burden, caregivers are relying more and more on technology for assistance in caring for their loved ones . 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 proficiency, 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?