The Burden of Elderly Care on African American Family Caregivers: The Case of the South Side of Chicago ()
1. Introduction
The care of older adults is growing in scale, complexity, and intensity. In the United States, as the baby boomer generation ages, the number of people needing these services and care is increasing. According to Shreya et al. (2025), the number of individuals aged 65 years and older is projected to nearly double, from 56 million in 2020 to 95 million in 2060, with the aging baby boomer generation fueling this increase and accounting for 75% of this demographic group (Mather et al., 2015). In addition to the growth of the aging population, activities of daily living (ADLs) are becoming increasingly complex. From 2015 to 2025, ADL needs have increased significantly and become more complex, encompassing medical and wound care, home care, finances, transportation, grocery shopping, and total care (AARP & National Alliance for Caregiving, 2025). These needs also include support for activities such as bathing, dressing, cooking, laundry, house cleaning, nursing care, medication management, and emotional and social interactions. This trend of complexity and demand is likely to intensify as more people age, chronic conditions accumulate, and health-care systems face pressure, making support for caregivers (training, respite, financial aid) both within institutionalized settings and in family settings a critical policy and social issue (National Alliance for Caregiving & AARP, 2020).
Copeland (2025), citing the 2025 AARP-NAC, reported that nearly one in four adults (i.e., 63 million Americans) provide family care for 59 million adults and 4 million children with complex medical conditions. This number represents a 45% increase since 2015 and has been attributed to systemic failures in institutionalized care (Copeland, 2025) or to the number of people seeking to age in place (Holmes, 2021; Gala & Holmes, 2022). However, family caregiving is a daunting task. It is often long-term, demanding, and time-intensive, with family caregivers devoting more than a full-time job’s worth of hours. They are not just helping occasionally but are deeply embedded in their loved one’s daily schedule and life. Many caregivers are in the “sandwich generation,” balancing eldercare with raising children and working full-time, which compounds financial, physical, and emotional strain. Their involvement not only delays or prevents the institutionalization of adult care but also affords older people the opportunity to age in their comfort zone, where personalized, culturally tailored care rooted in family traditions is provided (Schulz & Eden, 2016; Hailu et al., 2024). Family caregiving plays a critical role in the physical, emotional, and social well-being of older adults, enabling them to age in their preferred living and socio-cultural environment (Hailu et al, 2024).
The positive role of family caregiving is accompanied by enormous burdens and challenges for caregivers, including emotional stress, physical strain, and economic hardship (Bialon & Coke, 2012; Riffin et al., 2021; Chan et al., 2022; Gala et al., 2025). According to Bialon & Coke (2012), the majority of family caregivers experience the highest levels of health problems, conflicts, economic burdens, and stress, and only faith plays a positive role in alleviating their burden. Additionally, Chan et al. (2022) reported the cumulative impacts of psychological stress, emotional health, financial, and social burden on the family associated with caring for adults and those with illnesses within the family. The situation of African American family caregivers has not been conclusively studied, much less in Chicagoland, particularly the South Side of Chicago. Cothran et al. (2022) explored the situation of African American Alzheimer’s disease and related dementia (ADRD) family caregivers and self-care. They found a unique prioritization of family members’ care over self-care, along with a lack of formal support or training in responsive self-care interventions.
Therefore, the main goal of this study was to examine the cumulative impacts of family caregiving on mental health, social relationships, and economic well-being among African American families. Specifically, the study evaluated the physical, psychological, social, spiritual, economic, and vocational impacts of adult care on African American family caregivers using a mixed-methods approach. The approach integrates in-depth qualitative interviews (questionnaires) with quantitative descriptive statistics, using graphical representations and central tendencies to provide complementary and comparative interpretations of the interviewees’ responses. Several studies have employed this approach to examine the burdens of adult care on informal or family caregiving (e.g., Sezgin et al., 2022; Gaugler et al., 2018).
2. Theoretical Frameworks
Two theoretical frameworks are often used to guide caregiving experiences for aging family members: The Stress Process Model (SPM) and Role Strain Theory.
2.1. The Stress Process Model (SPM)
Developed by Pearlin et al. (1990), the Stress Process Model (SPM) is a well-established psychological, socio-economic, and cultural framework for understanding the experiences of family caregiving for aging family members. According to Pearlin et al. (1990), SPM is a multifactorial and dynamic process shaped by its components, which are stresses, resources (mediators), and outcomes over time. It is a framework that adopts a broader perspective, underscoring that caregiving is not solely an individual phenomenon but also extends across family systems and social structures.
The stress component of the SPM framework refers to external events or conditions that cause strain, such as difficult life events or persistent challenges. Examples of stress in caregiving are broadly classified as primary (e.g., functional decline, poor health, cognitive impairments, and behavioral issues) and secondary (e.g., emotional burnout, physical exhaustion, financial strain, social isolation, and relationship strain). By contrast, the resource (mediator) component comprises supports that can be used to cope with or alleviate these stresses. According to Judge et al. (2010), these resources can be external (i.e., social and material supports) or internal (i.e., faith, self-awareness, and efficacy). The outcomes of interactions among primary and secondary stressors and external and internal resources over extended periods constitute the third part of SPM: stress outcomes. It also accounts for the psychological resilience derived from caregiving, including personal growth, meaning, and spiritual fulfillment (Pearlin et al., 1990).
The SPM theoretical framework remains a cornerstone of caregiving research and policy, and several studies have adopted it (Whitlatch et al., 2001; Yu et al., 2020; Meyer et al., 2022). Meyer et al. (2022) conceptualized a framework for quality family caregiving guided by the SPM model, while Yu et al. (2020) evaluated and demonstrated the utility of the SPM framework for enhancing caregiving for family members living with schizophrenia. In general, SPM facilitates a balanced interplay among its components, enabling comprehensive intervention. These interventions aim to reduce caregiver stress by providing leisure services, counseling, care training, and economic and community support.
2.2. Role Strain Theory
Role strain theory, developed by Goode (1960), explains how individuals experience stress when role demands exceed their available time, resources, or abilities. It also helps explain the challenges individuals face when they are required to perform multiple tasks or roles. In the context of family caregiving for elderly family members, it encapsulates the hardships spouses, adult children, and grandchildren face in balancing the expectations of providing support to aging relatives with other life responsibilities. This includes managing household responsibilities, professional duties, and social relationships while simultaneously caring for aging family members who require extensive physical, emotional, and medical support. The theory is also used to explain the conditions of the “sandwich generations,” the generation enduring the compounded tasks of caring for grandchildren and aging parents (Neal & Hammer, 2017).
The Role strain theory emphasizes the outcomes of such overlaps over a prolonged period, leading to “strain” characterized by emotional burnout, psychological distress, and poor physical health. Therefore, the theory provides a framework for implementing interventions that support family caregivers. These interventions include workplace flexibility, caregiver training, leisure programs, and financial aid (Muriuki, 2022). It also serves as a guiding principle for research and policy recommendations aimed at promoting caregivers’ resilience. Several studies have applied caregiver role strain theory to examine the circumstances of family caregivers and aging family members (Borges et al., 2025).
3. Data and Methods
3.1. Data
The target population for this study was anonymous African American family caregivers on Chicago’s South Side (Figure 1). Fifteen volunteer middle-aged (i.e., 40 - 60) and older (i.e., greater than 60 years old) African American family caregivers were randomly selected through Chicago Department of Family and Support Services (DFSS)—operated satellite senior centers to complete an in-depth online questionnaire. The caregivers’ anonymity was maintained by not collecting any Personally Identifiable Information (PII) with the questionnaire responses, except their email address. The purpose of the questionnaires was explained to each interviewee, and consent to publish the results was obtained.
In general, the caregivers were related to the care receivers as children, relatives, parents, spouses, and family friends. Approximately four in five caregivers are single, widowed, or divorced, and only 21% are married, indicating that unmarried status offers greater flexibility by reducing competition for care responsibilities. All caregivers were college graduates, suggesting that college degrees provide the means and financial capability for caregiving responsibilities. The majority of the respondents (79%) were employed, while the remaining 21% were retired. The overwhelming majority of respondents (93%) had multiple years of caregiving experience for their family members, while only 7% had less than a year of experience.
Figure 1. Characterizing the backgrounds of the participants involved in the interview.
African Americans, who dominate 33 of Chicago’s 77 community areas, mainly on the city’s south and west sides, have profoundly shaped Chicago’s demographic, cultural, economic, and political landscapes (Pawlowski, 2025; Pawlowski et al., 2026). The city’s south and west sides were among the northern destinations that absorbed the southern Black population seeking industrial jobs, safety from racial violence, and better civic opportunities during the Great Migration (Hunley, 2019; Hunley & Gala, 2020). According to the 2020 Census, older African Americans make up about 10% of all African Americans and 11% of all older adults in Chicagoland (Gala & Holmes, 2022). A study examined whether African Americans age in place or relocate after retirement to improve living conditions, yielding mixed results (Holmes, 2021).
3.2. Methodology
This study employed a mixed-methods approach that integrated quantitative and qualitative methods to investigate the effects of family caregiving on the physical health, psychological well-being, social interactions, and economic viability of the caregiving family. As part of the qualitative approach, in-depth interviews were conducted to capture the thematic attributes of the psychological, physical, social, economic, vocational, and spiritual impacts of caregiving. The questionnaires were administered online to allow respondents to express their deeper insights in a comfortable, flexible, and relaxed environment. This approach also helped the investigator reach respondents efficiently and facilitated secure, easier data recording and transcription.
To capture the physical health impacts of caregiving, the questionnaires included items on the number of hours spent caregiving and the number of hours slept per night. They also inquired about the caregivers’ physical health status and whether their caregiving responsibilities had worsened it. Psychologically, caregivers were asked about feelings of overwhelm, stress, irritability, or depression related to their caregiving responsibilities, as well as their perceived overall mental well-being. The caregivers’ responses to the social and spiritual impacts were captured through questions assessing whether family caregiving responsibilities reduced time for social interactions with friends and family, imposed social isolation, and stimulated spiritual growth. Lastly, to assess the financial and vocational impacts of family caregiving responsibilities, questionnaires asked whether the caregiver contributed financially to care, whether job performance was affected, whether working hours were reduced, whether career choice was influenced, and whether an overall financial burden was experienced.
On the other hand, the mixed-methods approach included a quantitative thematic analysis of in-depth interview data, with exploratory statistical data analysis (ESDA). The ESDA uses spreadsheet visual and numerical tools to summarize and organize the data. The quantitative tools used in the study included histograms and pie charts for visual representation and numerical summaries such as means and standard deviations for characterization, pattern discovery, and anomaly detection. Several studies have used this approach to investigate the physical health, psychological well-being, social interaction, and economic impacts of caregiving on informal or family caregivers (e.g., Sezgin et al., 2022; Gaugler et al., 2018; Kunene et al., 2018; Azman et al., 2019; Bruinsma et al., 2022). Although the approach is robust in providing deep, insightful, unspoken, and humanized data on the complex issues surrounding African American adult care recipients and their impacts on family caregivers, it has a few limitations, particularly small sample sizes and the potential for bias in extrapolating findings to the general African American adult caregiving population. This study addressed these limitations by using caution in extrapolating findings to the general African American adult caregiving population.
4. Results and Discussion
4.1. The Physical and Psychological Impacts of Family Caregiving Responsibilities
Figure 2 shows participants’ responses regarding the physical and psychological impacts of family caregiving responsibilities. Accordingly, African American family caregivers often experience these impacts. On average, the vast majority of caregivers (i.e., 57%) devoted more than 4 hours per day to care, and slept fewer than 8 hours per night (i.e., 86%). Twenty-one percent of them devoted more than 8 hours to care, and 43% slept less than 4 hours a night. Additionally, only 21% of respondents reported no stress, and 7% reported no physical exhaustion. The remaining 79% experienced some level of stress; 93% reported varying levels of physical exhaustion, with 7% always feeling stressed and 14% always feeling exhausted, anxious, and irritable.
Figure 2. Participants’ responses on the physical and psychological impacts of family caregiving responsibilities.
Caregiving was more stressful than usual due to a full-time workload, in addition to the caregiving responsibilities of African American caregivers (i.e., 79% are full-time employed). As a result, caregivers don’t have enough time in a day to meet all needs and make things work. Another stressful aspect of their care is the deterioration of physical health from the toll of caregiving responsibilities. Some caregivers reported deteriorating health, including excessive weight gain and reduced muscle mass, from being indoors all the time, not getting enough exercise, and poor eating habits. There are also deteriorations in health, including memory loss, bone fractures, and pre-diabetic conditions.
The fact that emotional support, occasionally received from family, friends, or neighbors, may have improved the physical and psychological impacts of caregiving. The majority (57%) of respondents reported receiving support, while 43% reported receiving none. The mutual support of African American family members, including extended family, to alleviate the burden of caring for older adults is a tradition rooted in their culture and history (Ryner, 2022). The tradition is evident in some excerpts of the caregivers,
“Some friends checked on me regularly via text/phone”;
“My friends and family do support me,” and
“Siblings and other family members are supportive during care.”
“Friends and family actually cared and helped out. They didn’t abandon me, my ailing mother, in the situation.”
Despite fewer hours of sleep, physical exhaustion, and deteriorating physical health, most caregivers’ mental well-being was unaffected. The majority of caregivers (93%) reported good to excellent physical and mental well-being, while only 7% reported poor well-being. There are also revelations of a positive psychological view on the role of caregiving among the African American caregivers. Examples of what the caregivers said include,
“I think the idea of caring for the very parents that gave me everything is an amazing privilege.”
“Knowing I am bringing comfort, dignity, and companionship to someone who still deserves to feel valued, seen, and cared for is the rewarding aspect of my care.”
“My caring for my parents is a way to give back. I am glad they can see their teachings put into action, and they receive nothing but the best care.”
“The fact that I know that my parents are taken care of is priceless.”
These testimonies align with findings from the National Opinion Research Center survey (National Opinion Research Center, 2014) at the University of Chicago, social science research, and other studies (e.g., Beach et al., 2000; Assfaw et al., 2024; Gala et al., 2025). The National Opinion Research Center survey (National Opinion Research Center, 2014) reported that caregivers’ psychological satisfaction with caring for older family members was characterized by personal growth and a sense of purpose in providing excellent care to their loved ones. Similarly, Assfaw et al. (2024) noted that African American caregivers view caregiving as a traditional family value and duty and therefore frequently seek support from family members with greater ease.
4.2. The Social and Spiritual Impacts of Family Caregiving Responsibilities
Figure 3 shows African American family caregivers’ responses to the social and spiritual impacts of caregiving responsibilities. Accordingly, caregiving duties have affected time spent with friends and family and other social activities. While the majority of respondents (36%) felt caregiving had a varying degree of effect on social interactions, only 43% felt socially isolated, whereas 57% remained socially connected, particularly through churches and other religious practices. Caregivers also reported that family caregiving responsibilities positively strengthened their spiritual beliefs and religious practices. The majority of African American caregivers (71%) participated in and were influenced by spiritual or religious practices. In contrast, the same amount (i.e., 71%) reported that caregiving had strengthened their faith, whereas 21% said it had no effect.
Figure 3. Participants’ responses on the social and spiritual impacts of family caregiving responsibilities.
For African American caregivers, the main challenges were balancing the emotional weight of seeing a decline in their loved ones while still providing patience, compassion, and consistently high-quality care. These challenges also arise when the care recipient lacks the capacity for gratitude, displays emotional outbursts, anger, unwillingness to comply with prescribed care, and forgetfulness associated with mild dementia. Studies show that caregivers turn to God for meaning and purpose during stressful times of social isolation, lack of support, and seasons of hopelessness (e.g., Kramer, 1997; Casaleiro et al., 2022; Smith et al., 2026). According to Casaleiro et al. (2022), turning to religious/spiritual practices and cultivating a relationship with God serve as coping mechanisms, sources of emotional support, and a sense of community and connection with others. Caregivers have expressed their feelings along these lines as follows,
“Becoming stronger because of finding and then getting closer to God.”
“My church family has been supportive.”
“Through the church, I connected with a friend who has experienced the same thing.”
4.3. The Economic Burdens of Family Caregiving Responsibilities
Figure 4 shows the impact of family caregiving responsibilities on caregivers’ job performance, career choices, and finances. Accordingly, half of African American family caregivers reported that caregiving responsibilities have slightly to significantly affected their ability to perform their jobs or pursue career opportunities, resulting in reduced labor participation and fewer career opportunities, as established (Schulz & Eden, 2016; Kunene et al., 2017; Vasović, 2020; Fakeye et al., 2023).
Family caregiving had a moderate effect on caregivers’ financial situations. The majority of respondents (71%) indicated that family caregiving had a slight or significant impact on their financial situation, whereas only 29% reported that it did not. Respondents said,
“Someone who shares the burden with me”
“More financial options to care for them, especially helping them enjoy relaxing activities that are not costly.”
“I am taking my loved one for healthcare services, and I will have to stay in a hotel for a few days, which is significantly costly.”
Corroborating evidence shows that the financial burden and economic hardship of family caregiving include direct out-of-pocket expenses, such as lodging, medical care, equipment, drugs, and therapy for the care recipient (e.g., Bradley et al., 2022; Mudrazija & Aranda, 2025). African American caregivers spend more than 34% of their household income on caregiving expenses, compared with 14% for White family caregivers (Mudrazija & Aranda, 2025). Butrica and Karamcheva found that unpaid family caregivers experience substantial economic hardship because of extended care hours and the lack of paid family leave at most employers. For the African American caregivers in this study, time was a major challenge, as 79% were employed full-time. Most caregivers reported not having enough time in a day to meet all caregiving needs and manage daily responsibilities.
Figure 4. Effect of family caregiving responsibilities on job performance, career choice, and finances.
In contrast, Figure 5 shows the humane treatment African American caregivers receive from their employers. Respondents reported that employers provided accommodations to support their caregiving duties. The overwhelming majority of respondents (i.e., 85%) reported that employers offer workplace flexibility, whereas only 15% reported receiving no support or flexibility. With workplace support, the vast majority (83%) reported that they did not have to reduce their working hours or leave their jobs because of caregiving. Additionally, most (79%) said their income has not decreased since they started caregiving responsibilities, while 17% of respondents had to quit their jobs or reduce their working hours.
Figure 5. Impacts of family caregiving duties on the finances and vocation of the caregiver.
Given that interview participants were all 40 years of age or older, they may have had long employment histories, established loyalty, and strong employee-supervisor relationships, which helped create a supportive work environment. National Academies of Sciences, Engineering, and Medicine (2022) discussed common age-related workplace flexibility in the USA broadly categorized as temporal (i.e., scheduling), spatial (i.e., place of work, including the ability to work remotely or hybrid), and career path flexibility (i.e., scaling back on jobs or shifts). Similarly, Scholarios and Van der Heijden (2021) found that supportive employee-supervisor relationships in the workplace are more likely when the age distance between employees and supervisors is not high. However, when this distance exists and is high, the relationship is dominated by age-stereotyping and discrimination against older employees. In this study, the workplace flexibility reported by caregivers may reflect a relatively small age gap between employees and supervisors, as well as a supportive workplace environment. For the African American caregivers, supporting and caring for the parents who raised them was an extremely satisfying and fulfilling duty. Because they are not “duty caregiver” but are caring for their loved ones and providing appropriate health care, they have peace of mind. For these caregivers, caring for older family members was valued and dignified; hence, offering comfort, honor, and companionship through care was gratifying.
5. Conclusion
This study has examined the cumulative impacts of family caregiving on African American families and reported that African American caregivers to their adult family members experience physical and psychological effects due to caregiving responsibilities that span at least four hours per day, in addition to their full-time jobs. Time is the most pressing issue in caregiving, as there are many chores to be done. Feeling overwhelmed by the combined effects of an excessive workload and a shortage of time, caregivers were frustrated, depressed, and anxious. However, among African American caregivers, support from family and friends and a positive psychological view of caregiving as a rewarding duty have made the impacts on physical health and psychological well-being less burdensome. Such understanding is significant for guiding policy interventions that recognize the deeply rooted, honorable culture and traditions of African Americans that value caring for older adults within the family. It also emphasizes the powerful demonstration of a culture’s strength in shaping African American caregivers’ resilience in fulfilling their familial duty despite underlying health conditions, highlighting the need for targeted intervention.
Additionally, African American family caregivers’ responsibilities have social and spiritual impacts. A significant proportion of caregivers reported social isolation due to caregiving. The weight of witnessing loved ones’ cognitive decline and death, or of dealing with emotional outbursts and refusals to accept care (medication), is a test of faith (spiritually) for many African American caregivers who face their caregiving duties. Yet for many, caregiving strengthened their faith and religious practices, as these practices served as tools for coping with hardships, social isolation, and deteriorating health. The faith community also provided emotional support and a sense of shared life. This finding may support interventions that design a community (church)-based support system centered on the church and caregivers’ relationship to God as an essential component of African American adult care. It was evident that spiritual and religious practices add an effective, respectful, and culturally congruent protective layer to caregivers’ insurmountable social isolation and burnout during caregiving.
Lastly, African American family caregivers’ caregiving responsibilities have affected their job performance, career choices, and finances. Consequently, their financial situation is moderately influenced by extended hours of care, the lack of guaranteed paid family leave, and direct expenses. Despite unfavorable state and federal workers’ rights laws and policies on paid family leave, some African American caregivers have received workplace flexibility and support that has led many not to quit their jobs or opt for reduced work hours. This suggests that the workplace is a plausible setting for an intervention to change policies to give caregivers access to paid leave and flexible work arrangements, including telework. This also benefits workplace supervisors. Perhaps a long employment history at one place, which often indicates employees’ loyalty and stability, might have fostered not only a strong employee-supervisor relationship but also a supportive work environment for African American caregivers.
Although these findings are significant, the study has limitations. The study administered an in-depth questionnaire online to anonymous caregivers. Open-ended, in-person questionnaires, with follow-up questions, can deepen insights and improve them. Additionally, a focus-group study involving horizontal or lateral conversations, including peer interactions, can yield high-quality data that may improve these findings. Also, the African American family caregivers randomly recruited for this study live on Chicago’s South Side. Using results from this population to characterize African American caregiving across broader Chicagoland, the Midwest, or the nation requires caution. A future study with a larger sample size and a wider geographic area is recommended to provide better insight.
Acknowledgements
The authors are grateful to anonymous reviewers for this manuscript. Additionally, the Geographic Information Systems (GIS) laboratory at Chicago State University (CSU) provides software, and the Environmental Systems Research Institute (ESRI) provides technical support for the software.
Funding
This study was supported by the Community Research on Climate and Urban Science (CROCUS) an initiative led by the U.S. Department of Energy’s Argonne National Laboratory under grant number DE-SC0023298.
Data Availability Statement
The datasets presented in this article are available upon reasonable request from the authors. Requests to access the datasets should be directed to [email protected].
Ethics Approval and Consent to Participate
Because this was an anonymous online questionnaire, CSU IRB approval was not sought. Before beginning the questionnaire, participants viewed an information sheet that explained the study’s purpose, procedures, voluntary nature, confidentiality measures, and researcher contact information. Participants indicated their informed consent by agreeing to proceed/submit the questionnaire.
Consent for Publication
Informed consent for publication was obtained from all participants
Materials Availability
Data used in this study are available upon request submitted to the corresponding author, [email protected].
Author Contributions
In the research article, Ms. Richardson is the first author, as she led the research scope and problems, the sampling design, data acquisition, preprocessing, analysis, and a partial write-up. Dr. Gala is the corresponding author. He guided and led the definition of the research scope and problems, the design of the research approach, the analyses and interpretations of the research results, and the writing of the manuscript. Ms. Haile contributed valuable literature to support the interpretation of the research results, reviewed and edited the manuscript, and prepared the manuscript. Dr. Springer, Mr. Bhattarai & Ms. Alam contributed to the organization, formatting, writing, reviewing & editing of the manuscript.