Caregivers
Caregivers are people who, without being health professionals, provide regular help with health maintenance and daily living activities to someone needing that help. Caregiving tasks encompass a range of activities and may include personal care (e.g., feeding, toileting), transportation, and household chores. Caregivers also often help with many tasks in the domain of health care and health information management: communicating with healthcare professionals, interpreting information, finding additional health resources, and managing medications. Caregivers help more fragile individuals perform more health-related tasks. For example, they often monitor the health status of the person they assist and advocate for that person with health providers and service agencies. In addition, they increasingly perform tasks that have traditionally done by nurses: for example, giving injections, helping with tube feeding, and colostomy care (Caregivers, 2015). Depending on the cognitive status of those needing assistance, caregivers sometimes have to assume decision making power.
Demographically, caregivers are a diverse group spanning age, gender, cultural background, and income categories. While parents of young children can be considered a subcategory of caregivers, their health information and technology needs are unique, and so are discussed in a separate subsection below.
Sometimes, an individual needing assistance has a primary caregiver who does most of the caregiving tasks. At other times, care can be provided by a network of unpaid family and friends and paid caregivers who coordinate their activities. According to the National Alliance for Caregiving and A ARP “Caregiving in the US 2015” report (2015), approximately 16.6% of Americans are involved in unpaid caregiving of adults. Approximately 60% of caregivers were female, and 40% were male. The average age of a caregiver was 49 years. Most caregivers provide care for family members, often elderly parents or in-laws. Adult children caregivers often represent the “sandwich generation”: people in their 40s, simultaneously caring for young children and aging parents. Caregiving is usually a longterm task that stretches over years. While only 10% of caregiving is done by spouses, these kinds of caregivers spend a greater number of hours weekly on caregiving tasks. The most commonly named conditions requiring caregiving are “old age,” dementia, surgery/ wounds, cancer, mobility, and mental health issues.
To the extent that caregivers represent the interests and well-being of those for whom they care, caregiving-related health information needs align with the needs of their care recipients. They may be interested in accessing informational websites or apps tailored to a specific health condition or an age demographic, for example, seniors. Some caregivers need more technical step-by-step guidance on caregiving procedures. For example, most caregivers who perform nursing tasks report being thrown into the routine without preparation or training. Caregivers overwhelmingly (84%) report that they “could use more information or help on caregiving topics” (p. 25). The most commonly cited topics of interest include home safety, challenging behaviors and toileting and incontinence in care recipients, as well as managing caregiver stress. But the majority of caregivers report that recipients’ healthcare providers have not had conversations about these topics with them (Caregivers, 2015).
Caregivers may also need access to their care recipients’ personal health information. Privacy and levels of access thus become important considerations in this population. For example, it might be helpful for caregivers to have access to some content within their family members’ patient portals. Caregivers may wish to view test results, review prescriptions, and communicate with providers. At the same time, unless the recipient of care is not mentally competent to make decisions, that person should be the one defining the level of their caregivers’ access to their personal information. This creates legal, ethical, and technical challenges for portal developers, as granting tiered access necessitates verification procedures and separate logins and access levels. Adult patients can grant proxy access to spouses, partners, and adult children; for patients who are under 13, access by parents is the default setting; but patients between 13 and 18 may, in some states of the US, not be allowed to have portals at all, while in other states, they can designate particular content to be viewable by parents. This confusing ethical and legal landscape means that in this age group, this CHI technology is currently unable to achieve its full potential (Ford et al., 2004).
Another type of personalized technology is both potentially very helpful to caregivers and ethically thorny for caregivers. This is smart medical home technology (see Part II, Chapter 9). Smart medical homes can monitor the health status of a fragile resident. For example, they can detect a resident’s failure to take medication, their absence from their bed for more than a specified time interval, or a resident who has left the home without a key or identification. It can also alert a distant caregiver, for example, a remote family member, if any of these events occurs. While this technology can be invaluable for keeping a fragile family member with memory problems safe, it also takes away agency and control from the resident.
As people needing caregiving help are often rather sick, caregivers’ health information needs are correspondingly complex and require managing medication regimens and other reminders (via apps, for example), ordering medication from online pharmacies, communicating with healthcare providers, and coordinating care among providers. In addition, caregivers often need to coordinate care with other caregivers. For example, several adult children may share responsibility for caring of an elderly parent. Each of these adult children needs access to relevant health information. Moreover, both caregivers and the people cared for need a convenient, secure way of sharing their information and using it to coordinate their efforts (e.g., helping with transportation to appointments and other chores). When it comes to these kinds of tasks, online scheduling assistants can be very helpful.
Finally and importantly, caregivers have unique health information needs related to their own well-being. Being a caregiver increases the likelihood of health information seeking. Seventy-two percent of caregivers do online health research, compared to 64% of non-care-givers (Fox et al., 2013). Taking care of a loved one is a difficult task that can leave even healthy adults physically and emotionally exhausted. This is particularly true for higher-hours caregivers - who are often elderly spouses with their own health issues - as well as for those combining caregiving with care of young children. Caregivers may feel fatigued, burned out, and isolated. They may also feel guilty for experiencing feelings and emotions that they may view as inappropriate and be unwilling to call attention to themselves and their own needs. The stress of intensive caregiving may exert a toll on the caregivers own health. The multifaceted role of the caregiver, and the importance of considering the patient in the context of family, is one reason that a recent editorial called for a “family systems approach” to increase engagement of patients with CHI tools and interventions (Houston et al., 2019). As attention to this issue has been growing, numerous e-health support tools have begun to emerge for caregivers themselves. These tools support socialization and communication with other caregivers (e.g., online support groups and caregiver networks). Blogs of caregivers of PwD (people living with dementia) have been analyzed by nurse researchers and found to provide not just support, but a platform for information sharing about everything from clinical trials to service organizations (Anderson et al., 2016). Webbased education for caregivers has also been attempted in particular domains; for example, Arcia et al. (2019) involved Hispanic caregivers in design of an interactive web application for caregiver education about dementia (Arcia et al., 2019).
The remainder of this section provides examples of caregiver-used health information technology that aims to support caregiving experience: personal health record (PHR) portals that enables caregiver access, care-coordination apps, and technology-enabled psychosocial support tools for caregivers.
