Understanding Patient, Wellness, and Caregiving Work of Older Adults
HFE has proven valuable to understanding and improving the work and systems of health care. Outcomes of interest have included those that are patient-oriented such as patient safety and quality of care, as well as those that are clinician-oriented (Carayon et al., 2018). With the increasing focus and emphasis on patient engagement in health care, the idea that patients, their family, friends, and other nonprofessionals engage in effortful activities in the pursuit of health and well-being is increasingly accepted (Holden & Valdez, 2018; Valdez et al., 2015). In other words, all of those individuals engage in work (Hendrick, 2002). Thus, HFE professionals have begun to focus on the work of patients and their informal caregivers and have applied HFE methods to understand and improve this work.
Much of this research has taken a systems approach, as social, organizational, and physical factors shape patient work (Carayon, 2006; Holden et al., 2017). This approach, including the macroergonomic models utilized, has its foundation in sociotechnical systems theory and work system analysis and design (Kleiner, 2006; Wilson, 2014). Sociotechnical work systems can be described by five elements: (1) the people doing the work, (2) the tasks that make up the work, (3) the tools and technology they use to do the work, (4) the organizational context the work occurs in, such as cultural and social considerations, and (5) the physical environment the work occurs in. These are all influenced by the broader external environment the work occurs in, which is sometimes included as a sixth work system element (Carayon et al„ 2006, 2014; Kleiner, 2008). Holden and colleagues (2015, 2017) proposed a consolidated model of the patient work system, which integrated aging-specific (Fisk et al., 2009; Rogers & Fisk, 2010) and healthcare-specific HFE systems models (Carayon et ah, 2006; Holden et ah, 2013). The patient work system model highlighted the triad of person(s) completing tasks using tools or technology within a household and community, which account for the physical, social, and organizational domains of macroergonomics.
These HFE systems models will continue to be a useful framework for future work in patient ergonomics, including work focused on older adults. The components of the systems models are likely similar across age groups but the weightings might differ. For example, age-related changes in perception, cognition, and movement control might increase the impact of a poorly designed environment. Moreover, older adults as a group have less experience with information and computer technology, which can influence their ability to utilize unfamiliar health technologies.
Older adults engage in work related to their own health, including management of acute and chronic illnesses (Mitzner et al., 2013). Older adults are more likely to have chronic conditions such as heart failure, COPD, stroke, and diabetes, which can be improved by patient engagement, patient self-management, shared decision-making, and peer support (Tapp et al., 2018), all of which entail patient work.
Mitzner and colleagues (2013) described several types of self-management activities of older adults that could be related to specific illness: adherence to diet, exercise regimen and medication schedule, coordination of a care network, and use of medical technologies such as blood pressure and blood glucose monitors. Corbin and Strauss (1988) identified four broad types of patient work in their studies of patients with chronic conditions, some of whom were older adults, although their work did not focus explicitly on this population. Two of the four types of work fall under our definition of patient work, whereas the others fall under wellness work:
- 1. Managing the illness, including tasks related to medications, obtaining and organizing care, following treatment regimens, as well as the selfmanagement activities described by Mitzner et al. (2013).
- 2. Arrangement work to organize infrastructure and tools to maintain mobility and live with the illness.
Previous research has further specified tasks involved in self-management of chronic conditions. In diabetic patients (average age: 54, ranging from 22 to 75 years old), tasks include medication management, monitoring blood sugar, and general information management (Werner, Jolliff, et al., 2018). In heart failure patients, Willems and colleagues (2006) identified: organizing medications, managing fluid intake, and integrating recommendations for heart failure with recommendations based on other comorbidities (managing illness); organizing, partitioning day into chunks, especially due to fatigue, planning when to leave house due to medication side effects (everyday work); managing changes in ability to participate in activities and attend social gatherings, dealing with impact on self-image (biographical work); and managing mobility and organizing the infrastructure to live with severe heart failure such as house adaptations, getting walkers (arrangement work). In older patients with heart failure, the higher-level task of medication management has been described as drawing on five macrocognitive processes (sensemaking, planning, coordination, monitoring, and decision-making), which includes 15 subprocesses (Mickelson et ah, 2016).
A major area of patient work is related to information management; many conditions result in demanding information needs and processes to manage that information (Arbaje et ah, 2019). For example, one study found that cancer patients, including but not limited to older adults, need ten categories, with 64 subcategories, of information (Rutten et ah, 2005). Information collection and interpretation are important parts of self-management (Bourbeau, 2008); given the vast amount of information needed, information storage and organization are also essential (Moen & Brennan, 2005). At times, older adults have struggled to organize and track information, such as medication history and cost at specific pharmacies (Mickelson & Holden, 2018). Ancker and colleagues (2015) studied the management of personal health information among patients with multiple chronic conditions aged 37-89 (average age: 64), finding that patients managed vast amounts of information, including correcting errors in their records and making decisions about what information to share with which physicians and healthcare organizations. This substantial information management work was largely unrecognized or unsupported by healthcare professionals.
In summary, many researchers have attempted to define and categorize the work of patients with various conditions, sometimes explicitly focusing on older adults and sometimes including older adults as well as younger patients. These activities are summarized in Table 9.1. Importantly, patient work changes depending on the setting of care (see Chapters 2-6 in this volume). At home, patients have more autonomy and responsibility for tasks. For example, in the hospital or a skilled nursing facility, patients complete work related to following recommended care regime such as taking medications provided by clinical staff, but at home they (or a caregiver) are responsible for managing medications themselves. Not all these studies focused exclusively on older adults, but those that did focused on specific conditions, leaving gaps in our understanding of how the patient work of older adults (i.e. work related to illness) differs from younger patients. Further, not all conditions have been studied, and therefore additional, unidentified activities could exist.
Older adults perform goal-directed activities in pursuit of overall wellness that may not be linked to a specific illness or condition. Activities of daily living (ADLs), instrumental activities of daily living (IADLs), and enhanced activities of daily living (EADLs) are three commonly described categories of activities completed by older adults (Rogers et al., 1998; Spector & Fleishman, 1998). ADLs include basic activities of hygiene and personal care, e.g. bathing, showering, toilet hygiene, grooming, dressing, self-feeding, functional mobility (Spector & Fleishman, 1998). IADLs include basic activities necessary to reside in the community, e.g. cleaning, maintaining the house, managing finances, preparing meals, shopping (Spector & Fleishman, 1998). EADLs include participating in social and enriching activities, learning new skills, and engaging in hobbies (Rogers et al., 1998, in press; Smarr et al., 2011).
Some IADLs relate to health conditions (e.g. medication management) but others are more general wellness activities such as preparing meals or maintaining the home. EADLs are most related to wellness, in general, as they represent activities in pursuit of social engagement, social support, and quality of life. Some of the activities described by both Mitzner and colleagues (2013) and Corbin and Strauss (1988) are not directly tied to specific illness, but rather a general pursuit of wellness and quality of life and are also related to IADLs and EADLs. For example, adherence to a diet or exercise regimen may not be tied to a specific condition (Mitzner et al., 2013). Everyday work to keep life going, including ADLs, and the biographical work of dealing with potential loss, disruption, or change of self-concept and engagement in activities, go beyond illness (Corbin & Strauss, 1988).
Many researchers have studied activities not directly tied to specific illness and conditions in w'hich older adults participate to maintain their overall well-being (see Chapter 11 in this volume). Again, these activities change based on setting and are summarized in Table 9.1. ADLs, IADLs, and EADLs may not be specific to older adults, but they are often discussed and considered by researchers and clinicians in the context of older adults’ needs and abilities. Thus, we have limited understanding of how this work differs from the work of younger individuals, beyond changes due to natural outcomes of the aging process described previously. Again, autonomy related to the completion of these activities is decreased in formal healthcare settings relative to home settings. Participation in some of these activities, particularly the EADLs, may be completely curtailed in formal healthcare settings.
The terms patient and wellness work may lead to associations with work tied to managing one’s own health as an individual. Flowever, some older adults can also be informal (i.e. unpaid or nonprofessional) caregivers for others. In 2015, about
43.5 million adults in the United States provided unpaid care to another individual in the past year; nearly one in ten of those caregivers were 75 years or older (NAC & A ARP Public Policy Institute, 2015). Caregivers over age 75 were mostly females taking care of a close relative, such as a spouse, adult child, or sibling, needing care due to a chronic condition (NAC & A ARP Public Policy Institute, 2015).
Informal caregivers often help manage technologies and the physical environment to support the health of another (i.e. care recipient; Bratteteig & Wagner, 2013). They may help manage aspects of life that the care recipient is unable to manage, such as cleaning, cooking, and shopping (Bratteteig & Wagner, 2013). Informal caregivers may be more directly involved in the patient work activities described previously, such as making and coordinating appointments, providing or arranging transportation to and from those appointments, managing information, and advocating for the care recipient (Bratteteig & Wagner, 2013; NAC & AARP Public Policy Institute, 2015).
Clark and colleagues (2008) described caregivers monitoring symptoms and participating in decision-making with the care recipient and healthcare professionals. Other tasks could include basic nursing care, such as cleaning a wound, or work that aims to minimize or prevent the discomfort of the care recipient (Bratteteig & Wagner, 2013). Caregivers over age 75 typically had been performing this work for 5.6years on average, which required about 34hours per week to complete, without any paid assistance (NAC & AARP Public Policy Institute, 2015). Caregivers may also support the wellness work of the care recipients, encouraging them to exercise, eat well, continue their hobbies, and remain engaged in social/community activities.
In short, caregiving work can represent a significant demand, leading to work investigating the needs of and w'ays to support caregivers. High caregiver strain is associated w'ith higher risk of emergency department (ED) utilization among older adults, supporting the argument that better caregiver support could reduce visits to the ED (Burgdorf et al„ 2019). However, Wolff and colleagues (2020) found more than 40% of caregivers of older adults with dementia were never asked by healthcare professionals if they needed help or assistance (average age of caregivers was 59 years). Importantly, many interventions to support caregivers tend to focus on one individual caregiver. However, caregiving burden is often shared across a caregiving network or team; therefore, interventions to support caregivers may be more impactful if designed to support the entire team and their teamwork (Werner, Gilmore- Bykovskyi, et ah, 2017).
The Dynamic Nature of Patient, Wellness, and Caregiving Work
An important aspect of patient, wellness, and caregiving work is their dynamic nature. These work activities change as new health conditions and functional limitations arise. For example, a new health condition may necessitate a new medication, leading to new or different medication management tasks, and a disability could change the opportunity for social activities. Caregiving work may also be affected by changes to the caregiver’s or recipient’s individual health condition. For example, if the person they care for is hospitalized or develops a disability (Gill et ah, 2004), the caregiver will likely take on additional caregiving tasks, such as managing information, assisting w'ith activities of daily living, and so on.
Patient, wellness, and caregiving work also change across the spatiotemporal patient journey, in particular as the patient transitions from one care setting to another, and are impacted by changes related to space and time (Carayon et ah, 2020; Carayon & Wooldridge, 2020). Transitions between care settings represent an important point when work systems can fail to adequately support the needs of patients and their caregivers, resulting in negative outcomes, but could also be opportunities for resilience and error recovery (see Chapter 3 in this volume).
Older adults are especially vulnerable to failures during care transitions (Werner et al., 2016; Werner, Malkana, et al., 2017). For example, when older adults transition from home to hospital and then back again, care responsibilities are also transferred from the patient and caregiver to the clinician and then back again, but often with adjustment (Werner, Tong, et al., 2018). Self-management includes goal selection, information collection and interpretation, decision-making, and action (Bourbeau, 2008); patients must identify their goals, which may shift over time, and then make decisions and take action to achieve those (Bodenheimer et al., 2002), often in conjunction with their informal caregivers.