Health Management Occupations During COVID-19: Experiences of Older African Americans With Multimorbidity

Abstract

Older African Americans with multimorbidity are at an especially high risk of adverse outcomes due to synergistic risks conferred by age, chronic disease burden and social determinants of health. Chronic condition self-management is one way older African Americans can use health management occupations and exercise agency to reduce their risk of becoming severely ill, and during the ongoing pandemic, of COVID-19 infection. The objective of this study was to understand how the COVID-19 pandemic shaped health management occupations of older African Americans. In-depth qualitative interviews were conducted with 30 African Americans aged 65 and older who reported having two or more chronic conditions. Data were analyzed using thematic analysis. Data suggest how key health management occupations (accessing care; managing medications, nutrition, and physical activity; and social and emotional health promotion and maintenance) were utilized and also shaped by the pandemic. Another key finding was perceived benefits of the pandemic on health and well-being.

Background

Chronic condition self-management (CCSM) is the set of day-to-day actions that individuals take to manage their chronic condition, including managing medical care and information, symptoms and side effects, and the socio-emotional impact of chronic conditions on everyday life (Bodenheimer et al., 2002). CCSM is an important approach to maintaining health and improving chronic disease outcomes for those with chronic conditions. In addition, evidence suggests that poor management of chronic conditions can lead to a greater risk of COVID-19 complications (Bornstein et al., 2020). Thus, optimizing chronic condition self-management is an essential part of maintaining overall health (health management) for those who have chronic conditions. CCSM is also one way that more vulnerable populations, such as older African Americans, can use daily activities and thereby exercise agency to reduce their risk of becoming severely ill or dying due to COVID-19 infection and subsequent complications.

Health management is now a major category of occupation and includes CCSM-related activities that a person engages in to develop, manage, and maintain health and wellness routines (American Occupational Therapy Association [AOTA], 2020, p. 32). Specifically, health management includes the actions individuals take to self-manage chronic conditions such as monitoring dietary quality, adhering to prescribed medication regimens, and meeting physical activity guidelines as well as managing symptoms, socio-emotional health, and communication with health care systems (p.32). Developing a better understanding of how health management occupations are a part of CCSM is therefore important for preparing occupational therapy professionals to assist clients in CCSM. Moreover, health management occupations are notably relevant for higher risk older African Americans and even more so during a major pandemic.

Popular and scientific discourses during the COVID-19 pandemic have emphasized the disproportionate disease burden as well as social and economic suffering of minority populations, especially African Americans. COVID-19-related infection risk and mortality among African American populations have been attributed to social determinants of health, such as reduced access to care (Mackey et al., 2021), disparities in resources (e.g., educational opportunities, adequate housing, and access to transportation and food), and employment risk, as African Americans often hold paid employment positions that have been deemed as essential (Centers for Disease Control and Prevention [CDC], 2021). Older African Americans, defined as aged 65 and over, have been noted to be an especially high-risk subgroup. In addition to the COVID-19 risks of social determinants of health and advanced age, having multiple chronic health conditions (multimorbidity) confers additional risk (Ejaz et al., 2020).

Older African Americans develop multimorbidity earlier in life and accumulate more chronic conditions over time than their European American counterparts (Quiñones et al., 2019). In addition to having a higher number of conditions and experiencing earlier condition onset, African American elders experience worse disease outcomes, are more disabled, (Goyat et al., 2016) and die younger than European Americans with similar disease burden (CDC, 2017). Older African Americans also face significant challenges to treatment adherence and lifestyle recommendations of their CCSM protocol, including poverty, limitations in their activities of daily living, and less access to healthy food or safe opportunities for physical activity (Whitfield & Hayward, 2003). Thus, the burden of CCSM for many older African Americans is significant, and the burden may have been made worse by the COVID-19 pandemic.

The COVID-19 pandemic, which began in early 2020, disrupted nearly all aspects of everyday life because of public health measures to reduce the risk of transmission and illness. For older African Americans with multiple chronic conditions, disruptions to CCSM could have potentially adverse short- and long-term consequences for health and well-being. Yet, with few exceptions (e.g., Fukumura et al., 2021) to date, the literature regarding the impact of COVID-19 on occupation has overwhelmingly focused on the experience of front-line health workers and teachers and students. The purpose of this article is to utilize an ongoing study to describe and provide insights into the ways in which COVID-19 and subsequent public health responses affected engagement in health management occupations among older African Americans with multiple chronic conditions. As such, we contribute novel understandings of how health management occupations are important for this vulnerable population and how the pandemic environment shaped those occupations and to what effect. Such knowledge is especially important as occupational therapy moves further into health promotion and prevention domains to have a larger impact on population health (Moll et al., 2013; Reitz et al., 2020).

Method

The analysis presented here was part of a larger mixed-methods study aiming to (a) identify the CCSM challenges most significant to older African Americans in later life, (b) generate and validate digitized stories (i.e., videos) conveying those challenges, and (c) identify what health professions students learn and do not learn from those stories. This article reports only on findings from Aim 1.

Sample and Recruitment

All data were collected between August 2020 and December 2020. All study procedures were approved by the Wayne State University (IRB# 072019B3X) institutional review board. To participate in the study, individuals had to self-identify as an African American aged 65 years or older living within the city of Detroit, MI with a minimum of two chronic conditions. Our target sample of 30 participants was recruited from the Wayne State University Participant Resource Pool (PRP). The PRP is a volunteer registry of 1,700+ African American individuals aged 55 years and older willing to participate in the research of interest to them (Chadiha et al., 2011). A list of PRP members was randomly generated and sent to the study team. A trained research assistant (RA) conducted telephone-based participant screening, consent, and enrollment. Inclusion criteria were assessed through participant self-report.

Data Collection and Analysis

In-depth, semi-structured interviews, average 69 min (range: 34–107 min) long, were conducted by a trained, dual degree anthropology and social work PhD candidate with prior expertise and training in conducting semi-structured interviews. Semi-structured interviews are an appropriate approach when the study’s aim is to understand and compare individual experiences of a situation while also allowing respondents the freedom to introduce topics they desire to discuss (Fritz & Lysack, 2020). Interviews were audio-recorded and later transcribed with participant permission. Due to COVID-19-related restrictions on in-person research, qualitative interviews were conducted either using Zoom teleconferencing software or over the telephone based on participant choice and comfort with teleconferencing technology. Training on Zoom teleconferencing software was offered to all participants prior to the interview date. The RA mailed participants a handout with instructions on how to use Zoom. If a participant desired a pre-interview test of their ability to log on and use Zoom, the RA scheduled and conducted the test-run prior to the interview date.

The semi-structured interview guide was designed with open-ended questions to allow participants to guide the discussion to topics of their choice while ensuring consistent coverage of key topics. The interview questions inquired about participants’ chronic conditions, their past and current self-management behaviors, and their experiences of collaborating with providers to manage their conditions. The first three participants offered stories about the ways COVID-19 had affected their CCSM. The original interview guide did not include a specific question about the impact of COVID-19. Because the initial interviewees suggested this was an important dimension of their CCSM, the interview guide was revised to include the following specific prompt, “how has COVID-19 affected your self-management of chronic health conditions?”

The interviews resulted in 543 pages of transcribed text (229,791 words). For the purposes of this report, we extracted data that involved the experience of CCSM in the context of the COVID-19 pandemic from 27 interviewees who responded to the prompt about COVID-19 as well as from the initial 3 interviewees, which included a discussion of the impact of COVID-19 on CCSM, but not in response to the specified prompt (n = 30 participants total). The first two authors (a female European American occupational therapist/academic researcher trained in qualitative methods and a male African American undergraduate student) conducted thematic analysis to identify themes and topics in the data and to examine patterns within a data set (Miles & Huberman, 1994).

Data analysis began with familiarization of the data based on multiple readings and line-by-line coding of the text. Codes generated during the line-by-line coding were tested against the data and during the subsequent round of open coding. Our work followed a constant comparison method of analysis (Glaser, 1978), as we compared and contrasted data within and across cases and recoded data as patterns and tentative themes emerge. To ensure the trustworthiness of the analysis, the consolidated criteria for reporting qualitative research were followed (Tong et al., 2007). All data were coded and reviewed by two coders. We examined intercoder reliability and found an agreement among 95% of codes. Discrepancies in code labeling or interpretation were resolved through discussion and consensus. Data and preliminary interpretations were not presented to participants during the analysis.

Findings

The majority of participants were females (n = 22). The average participant age was 74 years (SD: 6.30), and the average number of reported chronic conditions was 4 (range: 2–6). The most reported chronic conditions across the sample included hypertension (n = 17), arthritis (n = 13), and diabetes (includes type 1 and type 2; n = 12). Despite efforts to recruit equal numbers of males and females into our sample, fewer males agreed to participate. Table 1 presents additional demographic data for the sample.

Table 1.

Sample Demographic Characteristics.

Demographic Variable	Total: n = 30, n (%)		Total: n = 30, n (%)
Age (years)	74 (6.30)	Number of people in household
Sex	Female: 21 (70)	Live alone	14 (46.7)
Years in current residence	22 (16.8)	1 person	12 (40)
Relationship status		2 people	4 (13.3)
Never married	4 (13.3)	Current employment status
Married	7 (23.3)	Working full-time, 35 hr or more a week	2 (6.7)
In a relationship but not cohabitating	3 (10)	Unemployed or laid off and looking for work	2 (6.7)
Separated	8 (26.7)	Unemployed and not looking for work	1 (3.3)
Widowed	8 (26.7)	Retired	22 (73.3)
Education		Something else	3 (10)
Some high school	2 (6.7)	Household Income
High school graduate or General Education Degree	2 (6.7)	US$5,000–US $9,999	2 (6.7)
Some college or technical school	9 (30)	US $10,000–US $14,999	4 (13.3)
College graduate (bachelor’s degree)	7 (23.3)	US $15,000–US $19,999	2 (6.7)
Graduate degree	10 (33.3)	US $20,000–US $29,999	1 (3.3)
Place of Residence		US $30,000–US $39,999	3 (10)
Own home, apartment, or condo	28 (93.3)	US $40,000–US $49,999	4 (13.3)
Home of a relative/friend	2 (6.7)	US $50,000–US $59,999	5 (16.7)
		US $60,000–US $69,999	1 (3.3)
		US $70,000 and over	6 (20)

As participants discussed the ways the COVID-19 pandemic affected their chronic condition self-management their stories often focused on the changes they experienced to health management occupations. The major health management occupation themes in the data were accessing care; managing medications, nutrition, and physical activity; social and emotional health promotion and maintenance; and benefits of the pandemic. All names included below are pseudonyms.

Accessing Care

One of the most reported COVID-19-related disruptions faced by participants was the ability to access health care systems and providers. In most cases, such challenges stemmed from clinics being closed, or because operational changes made to maximize health and safety, such as reducing the total number of people allowed in a treatment space. Those changes made it more difficult to schedule and attend appointments. Participants’ narratives demonstrated disruptions in accessing care across all levels of health care access, from routine medical checkups that are part of chronic condition management (i.e., A1c testing or blood pressure checks) to specialty services and surgeries. For example, Celia (female, 69) explained how her access to therapy had been disrupted, stating, “September of 2019, I had a left knee replacement, and then on March 2nd of this year, I had a right knee replacement. I didn’t finish the therapy with the right knee because of the virus.” Similarly, Casey (female, 73) noted delays in routine medical visits:

The last time I saw my doctor was before COVID. It was like January or February of 2019 . . . I was supposed to go back to see my doctor for a blood pressure check in April. That was canceled because of COVID.

Although the majority of participants expressed disruptions in their care were due to external circumstances beyond their control, some participants chose to delay health management activities out of fear of catching the virus or potentially being hospitalized. In most cases, individuals reported simply delaying routine care such scheduled checkups. In one extreme case, however, a participant made a potentially risky decision to not access care when ill. Bill (male, 65) had a history of heart attack, hypertension, and diabetes and shared how he had passed out multiple times for an unknown reason and still decided not to go to the hospital because of COVID-19:

I passed out coming home from work and just luckily, I made it in the door. I passed out again, Father’s Day but the Corona virus was at its peak, I didn’t go to the hospital because I didn’t want to be in there. I looked real, real bad but I prayed to God and worked on it myself. Anyway, with prayer, I came out of it but I should have been dead.

Despite fears and external barriers, there were some participants who were able to make sure they received all their regularly scheduled care despite COVID-19-related challenges. For those participants, new social distancing and hygiene protocols changed the experience. Although some participants expressed being pleased by these outward signs of health and safety, others were disappointed with how such measures changed the social interactions that were an expected part of the care experience, as (Celia, female, 69) noted when she stated, “You can almost feel the personal attention has left the room now and it’s more business-like, your talkativity almost to the point, ‘Here, put this thermometer in your mouth and then give me the reading.’”

Participants’ stories suggest multiple ways the pandemic disrupted access to care and changed the care experience. Delayed access to medical appointments, therapy, or specialty services could contribute to short and long-term complications or reduced efficacy of chronic condition management regimens.

Managing Medications, Nutrition, and Physical Activity

Managing multiple chronic conditions involves engaging in health management occupations outside of attending medical appointments. Managing one’s medication, managing nutritional intake, and engaging in physical activity were the most common types of occupations in our sample. Participant narratives suggest processes through which COVID-19 disrupted those occupations. For example, some participants attributed disruptions to self-management routines to the psychological toll of COVID-19. In some cases, chronic emotional stress reduced the motivation and attention toward health management behaviors. In other cases, as exemplified by the excerpt below, the chronic emotional toll of the pandemic was punctuated by acute emotional distress stemming from the deaths of friends and loved ones:

Yes, since COVID, we’ve had 10 different family members, or family friends, who have passed away . . . Now, I usually try to take my medicine in the morning after breakfast, but if I get a phone call before breakfast, about this, things are not going to go the way I planned for the day . . . so it disrupts your day and your routine. (Casey, female, 73)

For others, the loss of routine and external supports disrupted established habits and routines and contributed to forgetfulness with medications, as well as neglecting physical activity and nutritional management:

I’m not managing well. I have forgotten my medication a couple of times, a medication that I have taken for five years . . . I’m not getting out exercising, that I know that I need to do. I’m on some binge now with eating all the bad things. (Sydney, female, 66)

The majority of participants in our sample who engaged in exercise did so as part of group fitness classes. As such, adherence to physical activity was also disrupted because of the closure of senior centers and other community organizations. The lack of opportunities and group support for exercise not only hindered adherence to physical activity recommendations but reduced opportunities for healthy socializing as well. Whether it was dance, yoga, or other types of exercise, participants shared stories suggestive of the meaning and value group fitness classes provided, as the following excerpt illustrates:

I would go to the activity center and it would be older guys my own age group and we would do limited exercising and we would swim. Of course, we would fraternize each other. Sometimes go out to lunch and we would make a big day out of it. Of course, that ended with the virus. I guess I got to get another routine or something. (Peyton, male, 75)

Participant narratives suggest personal and situational processes through which disruptions occurred to health management behaviors. The emotional strain of the pandemic and disruptions to habits and routines made it difficult for participants to maintain health management behaviors and put additional burden on the self-driven dimensions of CCSM.

Social and Emotional Health Promotion and Maintenance

Although some participants noted adjusting well to the changes brought about by the COVID-19 pandemic, most participants lamented the loss of opportunities to participate in preferred social activities as a way to maintain their health. The loss of out-of-home activities led to an occupational imbalance: too little time involved in preferred activities and too much time alone focused on a limited menu of activities. Participants’ stories illustrate how occupational imbalance during the pandemic affected their physical and emotional health:

I am not coping well because I miss the socialization of all my dance friends. My body is stiff. I miss going to church. I miss volunteering . . . I miss having all the activities to do, and places to go, and things on my plate, and a crowded calendar. I miss all of that, so I am having a difficult time. (Tony, female, 79)

Participants also shared how they adjusted to maintain social engagement. In most cases, that meant changing from in-person to virtual participation, which required participants to have access to technology or learn to use new technologies. As the following statement suggests, however, the need to use or learn technology changed the quality of the experience:

I can go online and play [Bridge] with our group, the ones that do have computers and they play online. All of them don’t like it. My Thursday partner, he turned 93 or 94, December. He doesn’t have a computer and he misses it. (Ben, male, 84)

With fewer opportunities for social engagement, some participants described how they increased participation in meaningful solitary activities. One participant had worked as a seamstress and during the pandemic started sewing masks and donating them:

I’ve donated 50 masks to the rescue mission. That kept me busy. I didn’t even have to go out and shop for fabric or order fabric or things because I’ve been sewing for over 50 years. I had material here. I can make the masks. A friend, he would pick them up and he would take them down, deliver them for me . . . I’ve been making masks, giving masks away, donating them, whatever. (Taylor, female, 68)

In other cases, participants adopted new occupations and routines. Prior to the pandemic, one participant enjoyed eating out at restaurants with friends. After the pandemic began and those social engagements were canceled, she took on a new activity of delivering food to others. Her new activity not only contributed to her well-being through helping others but also indirectly helped with the nutritional management for her chronic conditions, as the following quote illustrates:

I call it my missionary day. I go pick up food and I take it to my pastor, a cousin who needs it, a friend, family member. I’ve been doing that to get my mind off of COVID and off all the negativity with my family drama and other things like that. I’m saving more money on the food bill by not going out to the restaurant as frequently. I’m actually getting free food with these food banks. (Celia, female, 73)

Many participants experienced a reduction in social participation because of the pandemic, which they suggested negatively affected their well-being. Yet participant stories also demonstrate how some in our sample attempted to modify their forms of social participation to continue or begin new meaningful activities to adapt to the situation.

Benefits of the Pandemic

Although participant narratives paint a mostly challenging picture of health management occupations during the COVID-19 pandemic, some participants seemed to experience the pandemic-related shutdown as no more than a minor inconvenience. For example, Jesse (male, 74) explained that the pandemic had not affected him very much because he was married and lived with his wife, whereas Devan (female, 75) echoed the sentiments of other participants when she stated, “It hasn’t really affected it that much other than me getting out and doing activities out but I can do my exercises and everything at home.”

Other participants discussed how the pandemic had been beneficial to their chronic condition self-management. For example, one participant noted dining restrictions forced them to reduce dining out and increase eating at home, which aided nutrition management:

My diet has changed because I’m not eating as much food . . . We used to go out to the restaurant quite a bit and that has stopped. I’m cooking more at home, which is making me a little more healthy and not pick up as much carry-out and all that. (Jan, 76, female)

Another benefit of the pandemic was the opportunity for participants to focus on themselves. Older adults in our sample often were responsible for the care of grandchildren, neighbors, friends, or aging spouses. For some of them, the pandemic provided respite from caregiving responsibilities. For example, one participant explained her granddaughter had a disability that required frequent visits to health care professionals to manage. The temporary closure of many health care practices provided her a reprieve from the busy caregiver schedule:

I would get tired . . . Oh my goodness, before COVID almost every week, she [granddaughter] had some kind of doctor’s appointment and it really was keeping me busy. COVID gave me respite from doing all that. (Dakota, female, 74)

Another noted benefit of the pandemic was that participants reflected on relationships they had, including people they had not spoken to in some time. In the absence of their typical social routines, participants found themselves reaching out to people more frequently and more intentionally than they had prior to the pandemic. One participant expressed missing seeing her friends at dance class but noted she had created new ways of connecting with those in her social networks:

I decided to make the best of it. You take lemons and you try and make lemonade, so I have tried to read more, I try to call people I haven’t talked to in 20 years. I try to send out more cards, and do more things for other people, and spend a little time at places that I wouldn’t normally spend time, even at the elevator. (Jesse, male, 74)

Although many participants expressed feelings of loneliness and being disconnected from others, their stories suggest variation in experiences while also illustrating creativity and resilience in finding new ways to connect socially and maintain their well-being.

Discussion

The purpose of this analysis was to understand and describe the ways in which COVID-19 and subsequent public health responses affected engagement in health management occupations among older African Americans with multimorbidity. Among our key findings are that key health management occupations identified by the AOTA Occupational Therapy Practice Framework (AOTA, 2020) were evident in our data although we did not ask about them specifically in our interview guide. Our primary themes of accessing care; managing medications, nutrition, and physical activity; and social and emotional health promotion and maintenance reflect almost the full range of health management occupation categories of the OTPF. Only personal care device management was not significantly present in our data. Moreover, habits and routines appear to be important for many participants in structuring regular occupations necessary for CCSM.

Our findings also highlight that health management occupations in our sample were often conducted—prepandemic—outside of the home, and those brought additional benefits (e.g., socialization and social support). Such findings align with prior research suggesting that health management activities, such as exercise, may have a greater positive impact when conducted out of the home versus in home (Hambrook et al., 2020). Those occupations in the community also involved new challenges because of the pandemic-related closures of places in which those occupations were conducted. As such, occupations linked with neighborhood and community resources were more tenuous and the pandemic’s effect of eliminating those resources and occupations were deeply felt by many of our participants.

Our findings also complement existing research about health care access during the pandemic. Similar to prior studies (e.g., Fekadu et al., 2021), many in our sample experienced reduced access to health care due to facility closures and personal fears over the risk of COVID-19 transmission while in health care settings. Our data also align with prior studies examining health behavior changes during the pandemic. For example, Wu et al., (2021) surveyed 8,041 Michigan residents in June 2020 to understand changes in health behaviors brought about by the Governor mandated “Stay Home, Stay Safe” order. Those authors found both positive and negative changes in health behaviors. For instance 23.1% of the sample reported worse nutrition, 31.9% reported weight gain, and 38.6% reported decreased rates of moderate-to-vigorous exercise. However, 26.1% of the sample reported better nutrition, 32.4% reported weight loss, and 23.0% reported increased rates of moderate-to-vigorous exercise. Similarly, our findings suggest both positive and negative changes to health management occupations took place, but also provide insights into how and why some changes occurred.

Importantly, our findings also illustrate the centrality of occupation in coping with the significant challenges of CCSM during the pandemic. There were impressive signs of resilience and creativity as participants adapted valued and necessary occupations and created new forms of engagement. Creativity and resilience in adapting occupational engagement may help explain why some studies have found older adults and African Americans to be more resilient to the mental health effects of COVID-19 pandemic (Owens & Saw, 2021; Vahia et al., 2020). For example, Owens and Saw (2021) examined the self-reported mental health of 6,932 adults as part of the Understanding America Study COVID-19 Tracking Survey. The results demonstrated African Americans were significantly less likely to report symptoms for anxiety, depression, or both during the pandemic, reporting half the prevalence of non-Black Americans.

Limitations

The study has several limitations including a sample drawn from a single metropolitan area that was subject to a prolonged COVID-19-related shutdown. The experiences, data, and findings may be different for older adults in areas with fewer COVID restrictions. Despite these limitations, our sample includes older African Americans who are diverse in terms of socioeconomic factors, life experiences, and the degree to which the pandemic affected health management. As such, our data provide new and much-needed insights into older African American health management occupations, particularly for those with multimorbidity.

Conclusion

We present data and findings from an investigation of how COVID-19 and subsequent public health responses affected health management occupations among older African Americans with multimorbidity. In addition to presenting the first in-depth insights into older African American health management occupations for CCSM, the analysis shows how those occupations were brought into sharper relief, both in negative and in positive ways, in response to pandemic-related changes. Implications for occupational therapy practice are several. First, health management occupations are important avenues of intervention for older African Americans with multimorbidity. Second, habits and routines were important dimensions of pandemic-related disruptions and adaptations of health management occupations, and occupational therapists should consider them carefully as central to any intervention. Third, health management occupations were used in creative ways to be resilient in challenging times, and occupational therapists could therefore enhance the resilience of older African Americans as they partner with them in CCSM.