Abstract
Asian Americans are the fastest growing racial and ethnic group with nearly 1 in 5 self-identifying as a family caregiver. Understanding the needs of ethnic minority caregivers is needed to develop inclusive technology solutions that aim to support caregivers within these marginalized communities in managing their own health. This study aimed to describe and compare the common needs of Asian American (AA) and White caregivers through data collected using a short message service-based conversational agent. Caregivers (26 AA and 84 White) shared their daily experiences for 14 days, and the data were analyzed using directed content analysis to identify needs based on Maslow’s Hierarchy of Needs. Overall, AA and White caregivers expressed different needs in physiological, safety, and esteem categories. Culturally tailored support and resources are needed for family caregivers from diverse cultural and ethnic backgrounds.
Introduction
In the United States (US), an estimated 53 million family caregivers provide unpaid care to a child or an adult with a chronic condition1. With a growing aging population, the number of family caregivers is projected to increase. Family caregivers face many challenges as they strive to care for their loved ones. Being a family caregiver can have physical, emotional, and psychological consequences, such as distress, anxiety, depression, fatigue, sleep disturbance, and isolation2,3. The physical, psychological, and financial challenges of caregiving can affect the overall health of caregivers. However, caregivers from ethnic minority groups experience additional challenges related to their culture. Yet, these challenges have not been well characterized, making it difficult to design supportive technology tailored to these caregiver needs.
As the aging population in the US is becoming more ethnically diverse, it is expected that there will be greater diversity among family caregivers4. Asian Americans (AA) and Pacific Islanders are the fastest-growing ethnic group within the aging population5. One in five AAs reported being informal family caregivers6. While little is known about the health outcomes, one in three AA caregivers report that caregiving has made their health worse and 44% more report higher levels of emotional stress compared to other minority groups1. Comparatively to their White counterparts, AA family caregivers spend more time providing care, utilize less formal support, and have been more depressed1,7. Despite the disproportionate burden and high levels of perceived need for mental health support in the AA community, AAs are less likely to seek help than other racial and ethnic groups8. AAs face barriers in accessing mental health services such as culture-related stigma, shame, and perceptions of health and treatment that differ from Western beliefs that delay seeking help until the severity of the mental health problem is high, as well as financial constraints, lack of culturally-appropriate services and utilization of alternative resources within the community8,9. There is a critical need to develop culturally-appropriate interventions to address the needs of populations at risk for experiencing health disparities.
The primary care setting is regarded as the ideal context to assess and address their needs, yet screening and education about caregiver support resources is not standard practice in the clinical setting10. Furthermore, AAs express that they more often seek to have conversations with healthcare professionals about the care recipient’s needs over their own self-care needs1. Additionally, Liu et al. found that AAs are less likely to participate in health research than other ethnic minority groups11. Therefore, there is little knowledge about the specific needs and self-care practices of Asian family caregivers in research and clinical practice.
With a significant number of AAs owning and utilizing technology, developing culturally sensitive digital health interventions aimed at supporting caregivers may present an opportunity to enhance self-management of self-care practices in this population. There is a gap in the literature exploring the needs of Asian family caregivers that can help to inform the design of inclusive digital health interventions. Prior research on the needs of Asian family caregivers has focused on the various cultural factors that influence their caregiving experience and the cultural, linguistic, and systemic challenges they face within Western society12. Developing and implementing interventions to promote self-care within the caregiver population has been an ongoing challenge. While there have been interventions focused on tailoring content and evaluating acceptance within Asian family caregiver subpopulations, many of these interventions are in-person and do not consist of self-care topics. Digital health interventions have shown promise in improving access to support for caregivers, as well as decreasing caregivers’ depression, and anxiety, and improving self-efficacy13. However, little is known about the relevance of existing digital interventions in meeting the needs of Asian caregivers. There is a need for research to inform the design of culturally-sensitive digital health interventions.
To address this gap, the purpose of this study is to describe and compare the common needs related to self-care and well-being of Asian caregivers and White caregivers by analyzing data collected through a short message service (SMS)-based conversational agent. This study investigates a journaling exercise delivered by a conversational agent as part of a larger project to develop and test a digital health intervention called “Caring of Caregivers Online” (COCO). COCO utilizes an artificial intelligence-(AI)-enabled conversational agent (i.e. chatbot) and a provider platform to support family caregivers14. COCO provides on-demand, personalized, and emotionally-intelligent caregiving support and interactive self- and family-management skills development to those caring for a family member with a chronic condition. Enhancing the inclusivity of COCO’s features and content through culturally sensitive design involves engaging ethnically and culturally diverse caregivers within research to understand their needs. To inform design efforts that enhance COCO inclusivity, this study aims to describe and compare the caregiving support needs of family caregivers self-identified as Asian and White Americans.
Methods
Study Design
This study was part of a 14-day journaling exercise study that delivered daily well-being check-in dialogs through SMS to family caregivers. The COCO team developed an SMS-based conversational agent to collect qualitative data about the daily experiences of caregivers and their emotional status in response to those experiences. Data was collected through daily surveys and a post-study survey. The study procedures were approved by the University of Washington Institutional Review Board.
Participant recruitment
We recruited family caregivers from our prior study participants who agreed to receive updates from the team for future research opportunities. We also recruited through local communities and mailing lists such as the university’s employee caregiver groups, health clinics (e.g., autism center), a local asthma coalition, a local health department division serving low-income families, and the National Family Caregiving Alliance website. We also used purposive sampling to recruit family caregivers who self-identified as AAs. The inclusion criteria for the journaling exercise study were: (1) age 18 years and older; (2) self-identify as a family caregiver caring for a person with a chronic health condition; (3) able to read and write in English; (4) have a mobile phone with SMS service. For the current study purpose, we included all participants who: (1) completed at least five days responding to the daily survey; (2) completed the post-survey; (3) self-reported their race and ethnicity as being either AA or White.
Participants were provided a link to sign a digital consent form to participate by completing a brief survey to obtain contact and demographic information. Participants received up to $25 for completing the SMS study and a brief 5-min post-study survey. Participants could text ‘STOP’ or email the study team to withdraw from the study at any time.
Data Collection
Data collection included a daily survey for 14 days and a post-survey. For the daily survey, we developed text prompts to engage participants in reflection on daily experiences, one positive and one negative (Table 1). Responses were open-ended free text. Research team members reviewed the messages daily for safety monitoring. Following the study, participants completed a post-survey to report demographics, including age, gender, employment status, and family income level.
Table 1.
Example of daily survey prompts sent via SMS.
| Hi, [participant preferred first name]! I’m glad you are taking the time to reflect. Tell me about a positive experience that you had today. [participant response] In one or two words, how did that make you feel? [participant response] I’m glad to hear that. Tell me about an experience that could have been better for you today. [participant response] In one or two words, how did that make you feel? [participant response] I understand how that could have made you feel. Thank you for sharing with me. |
Data Analysis
Demographic data from the post-survey were summarized with descriptive statistics. The qualitative experiences described by participants in free text responses on the daily survey were analyzed by a team of subject matter experts in clinical psychology and nursing. The coding process was conducted through directed content analysis:15 The team developed an initial codebook based on an existing theory prior to data analysis. As data analysis proceeded, the initial codebook was revised and refined with additional codes. For this study, Maslow’s Hierarchy of Needs16 served as the theoretical framework for the initial codebook to categorize experiences. This theory describes five levels of needs that must be met to promote health and well-being. While the bottom two levels address physiological deficits and safety needs, such as security and stability, the top three levels address psychological needs that include love and belonging, esteem, and self-actualization (i.e., self-fulfillment and growth). This framework has been used across many fields, including nursing, to identify the needs of patients for holistic support that can fulfill those needs.17,18 For our purposes, Maslow’s theoretical framework is used as a guide where daily experiences reported by caregivers are viewed as experiences that address caregivers’ needs. This framework is used to identify the needs of family caregivers in terms of self-care and well-being needs. Therefore, positive experiences reported by caregivers were considered to be needs that were met, and negative experiences represented unmet needs.
Data were uploaded to HumanFirst, a data annotation platform for conversational AI that uses active learning and clustering methods to prioritize and group similar intents together for rapid annotation. Two team members independently coded the qualitative responses with the initial codebook that reflected the five levels of Maslow’s hierarchy of needs. New codes were added to expand the codebook with subcategories as the team members analyzed the data. During this process, the primary coder evaluated and revised the codebook to reduce the redundancy of the codes. This process resulted in a final codebook comprising 45 different hierarchical subcategories of positive and negative experiences. Following directed content analysis, we counted the frequency of unique occurrences of AA and White participants’ responses within each subcategory. For instance, if a participant had multiple responses categorized within ‘Positive + Spouse + Spending time together’, only one response would be counted. Counting is defined as “the assignment of numerals to objects or experiences according to rules to represent facts and conventions about them”19. According to Bazeley, qualitative data that has been coded can be counted and can include the number of times, or frequency, a category, theme, or word that appears in the data. We then calculated and compared the percentage of those occurrences between participants in the two groups (i.e., AA, White) with the Chi-Square Goodness of Fit Test (X2). The hypotheses were that the proportions of caregivers differed in their experiences in physiological needs, safety, love and belonging, esteem, and the overall experiences between AA and White American caregivers.
Results
A total of 153 family caregivers consented to participate in the study. Among them, 34 individuals were excluded for not completing the daily survey for at least five days or not completing the post-study survey. Among the 120 remaining participants, 110 self-identified as AA or White. The other 9 participants who self-identified as Black/African American (3), non-White Hispanic/Latino (4), and other (2) were excluded from the current study. Thus, 26 AA caregivers and 84 White caregivers were included in the current study. The majority of the participants were female (92%), two-thirds were working full-time, and about half had an annual household income of $80,000 or less (Table 2). Forty-five participants were caring for multiple family members. The mean age for pediatric care-receivers (n = 134) was 6.4 years (SD = 4.2), and the mean age for adult care-receivers (n = 43) was 68.5 (SD = 20.1). The most common health conditions of the care-receivers include neurodivergent (e.g., Autism; n = 23), mental health (e.g., anxiety; n = 11), developmental delay (n = 8), memory disorders (n = 6), and diabetes (n = 6).
Table 2.
Participant demographic characteristics.
| Demographic Characteristics | Asian (n = 26) | White (n = 84) | |||
|---|---|---|---|---|---|
| Gender | Male | 2 | 8% | 5 | 6% |
| Female | 24 | 92% | 77 | 92% | |
| Non-Binary | 0 | 0% | 2 | 2% | |
| Age | 18-29 | 0 | 0% | 5 | 6% |
| 30-49 | 22 | 85% | 64 | 76% | |
| 50-64 | 3 | 12% | 13 | 15% | |
| 65+ | 1 | 4% | 2 | 2% | |
| Employment Status | Full-Time | 17 | 65% | 60 | 71% |
| Part-Time | 5 | 19% | 15 | 18% | |
| Other | 4 | 16% | 9 | 11% | |
| Annual Household Income | Less than $19,999 | 0 | 0% | 3 | 4% |
| $20,000 to $59,999 | 3 | 12% | 10 | 12% | |
| Greater than $60,000 | 19 | 73% | 65 | 77% | |
| Do not know/do not want to share | 4 | 15% | 6 | 7% | |
Each caregiver responded to the daily prompts for at least 5 days and up to 14 days. Thus, each participant shared at least ten experiences and up to 28 experiences. A total of 1,914 daily caregiver experiences were analyzed (348 from AA caregivers and 1,566 from White caregivers). Table 3 presents the percentage of caregivers in each group reporting experiences in selected example subcategories across Maslow’s hierarchy of needs. The Chi-Square Goodness of Fit Test showed that the proportions differed significantly by groups (Asian vs. White) in the positive and negative experiences in physiological (p’s<0.05), safety (p’s<0.05), and esteem (p’s<0.01) categories, but not in love and belonging categories (Table 3).
Table 3.
Percentages of Caregivers Reporting Experiences in Selected Categories.
| Category | Description | Example Positive Subcategory (21 in total) | AA n=26 | White n=84 | Example Negative Subcategory (24 in total) | AA n=26 | White n=84 |
|---|---|---|---|---|---|---|---|
| Physiological (7 subcategories) | Food, sleep, shelter, clothing | Self-care + eating | 0% | 5% | Self-care + eating | 4% | 6% |
| Self-care + sleep | 12% | 5% | Self-care + sleep | 7% | 15% | ||
| x2 (2,35) = 8.02, p = 0.02 | x2 (3,47) = 6.94, p = 0.07 | ||||||
| Safety (9 subcategories) | Health and wellness, personal security, financial security | Self-care+mental health | 0% | 2% | Own health + physical pain | 0% | 18% |
| Self-care+take a break | 19% | 6% | Own health + not feeling well | 27% | 25% | ||
| Self-care + exercise | 31% | 33% | Self-care + lack of exercise | 19% | 14% | ||
| x2 (4,117) = 10.06, p = 0.04 | x2 (3,109) = 22.74, p <0.001 | ||||||
| Love and belonging (14 subcategories) | Friendship, intimacy, family, connection | Kids + good behavior | 11% | 27% | Kids + difficult behavior | 19% | 15% |
| Family + family time | 41% | 55% | Family + not enough time | 4% | 8% | ||
| Self-care + socialize with friends | 37% | 52% | Partner + issues | 7% | 20% | ||
| x2 (5,345) = 4.41, p = 0.49 | x2 (7,225) = 10.20, p = 0.18 | ||||||
| Esteem (14 subcategories) | Status, recognition, self-respect, self-esteem, self-confidence | Work + general | 4% | 21% | Work + stressful | 11% | 33% |
| Work + productive | 33% | 23% | Work + unproductive | 15% | 23% | ||
| House chores + productive | 15% | 11% | House chores + stressed | 0% | 10% | ||
| x2 (6,150) = 23.78, p < 0.001 | x2 (6,126) = 16.97, p = .009 | ||||||
| Self-actualization | Realizing one’s full potential | n/a | Role conflict | 4% | 6% | ||
| All categories | x2(49, 1241) = 129.93, p <0.001 | ||||||
In physiological needs, few caregivers in either group reported positive experiences in eating healthy. A higher proportion of AA caregivers reported positive experiences of sleep, while White caregivers reported more negative experiences related to sleep.
For safety, few participants in either group reported positive experiences in terms of their self-care practices in mental health or relaxation, but about one-third of caregivers in both groups shared exercise as a positive self-care practice. More AA caregivers (19%) discussed opportunities to take a break than 6% of White caregivers. About a quarter of caregivers shared their poor health and lack of exercise as negative experiences. No AA caregivers reported negative experiences within the subcategory of physical pain compared to 18% of White caregivers.
Within love and belonging, Both AA and White caregivers discussed positive experiences with their children, partner, and friends. White caregivers more often discussed positive experiences in the subcategories of spending time with kids (AA=31%, White=51%), spending time with family (AA=42%, White=55%), and socializing with friends (AA=38%, White=52%), but the difference was not significant. Comparable proportions of AA and White caregivers shared negative experiences in the category of love and belonging, with about one-third in both groups reporting caregiving challenges.
Within esteem, AA caregivers more often reported positive experiences in which they were productive at work, while generally, positive aspects of work were reported less often by AA caregivers. White caregivers reported negative experiences of work-related stress more often than AA caregivers. Unproductive work behavior and stressful working experiences were reported more often by White caregivers (Table 3). Within self-actualization, there was only one subcategory where caregivers discussed role conflict, and the occurrences were low in both groups.
Discussion
This study describes day-to-day experiences reported by AA and White family caregivers through the utilization of an SMS-based conversational agent delivering a journaling exercise to caregivers of people with chronic conditions. To our knowledge, one study explored the self-care needs of AA family caregivers through in-depth interviews to evaluate a culturally-adapted smartphone-based app prototype15, in which the sample consisted of both Chinese immigrant families and non-family caregivers. Our study found that AA and White family caregivers had significant differences in their caregiving needs in the physiological, love and belonging, and esteem categories of Maslow’s Hierarchy of Needs. AA caregivers more often discussed positive experiences of good sleep (physiological), work productivity (esteem), and the ability to take time for themselves (esteem). White caregivers more often discussed positive experiences of children’s good behavior (love and belonging), spending time with children (love and belonging), spending time with friends and family (love and belonging), as well as general aspects of work (esteem). More White caregivers discussed negative experiences involving partner issues (love and belonging), physical pain (safety needs), house chores (esteem) as well as work stress (esteem). These results suggest that the two groups’ common needs related to self-care and well-being vary. While findings from this study may provide insight into the needs of AA caregivers, it merely provides a starting point toward developing more inclusive and culturally sensitive digital health solutions for AA caregivers.
Within the category of physiological needs, AA caregivers more often discussed positive experiences of sleep, while White caregivers more often discussed negative experiences of poor sleep. Sleep influences health, well-being, and quality of life20. Consequences of sleep disturbance include increased stress response, somatic pain, reduced quality of life, emotional distress, as well as cognitive, memory, and performance deficits. Many caregivers experience sleep disturbance21, presenting a need for solutions to support caregivers in sleep hygiene techniques.
In the category of safety, which includes health and wellness, our findings showed that White caregivers discussed unmet needs related to their own physical health, specifically pain, more often than AA caregivers. This may support the finding that physical health status is more likely than psychosocial health to trigger the movement toward reclaiming self-care for family caregivers22. AA family caregivers are at a higher risk of experiencing emotional difficulties related to caregiving than other racial/ethnic groups, increasing the likelihood of delaying response or identifying self-care needs1. However, the role of caregiving can undoubtedly cause mental and emotional stress for all caregivers alike, but the results of our study show that both AA and White participants rarely discussed the need for self-care related to mental health. There is a need to support caregivers in identifying the mental health impacts of caregiving and recognizing the need for self-care. For AA family caregivers, our findings may suggest that inclusive digital interventions should consider incorporating resources that broaden the caregiver’s understanding of the influence that familism and filial piety can have on their own health and well-being, empowering AA caregivers to be able to identify, recognize, and respond to their own self-care needs.
Further, we found that White caregivers discussed met needs in the love and belonging categories of spending time with kids and family and socializing with friends at a higher rate than AA caregivers, although the differences were not significant. These findings were interesting since prior literature supports the strong sense of familism among Asian cultures in which family harmony is highly valued, as well as literature emphasizing the importance of social support for AA caregivers12. Though love and belonging needs are an integral part of attaining happiness and fulfillment, AA caregivers discussed these needs less than expected. Caregivers of marginalized ethnic groups have often prescribed the role of caregiving based on the cultural value of familism23. Compared to European American caregivers, AA caregivers often feel they lack a choice in taking on their role as a caregiver since caregiving is ingrained in their culture23. A perceived lack of choice in taking on the caregiver role has been shown to be associated with higher levels of emotional stress, physical strain, and negative health impacts24. Therefore, it is possible that AA family caregivers in this study felt an underlying obligation to care for their loved ones, who could be a child or older family member with a chronic condition, which may result in less positive appraisals of spending time with family members who may be the care recipient. AA family caregivers may need support in normalizing the impacts of filial obligation and identifying sources of belongingness, whether that be family, friends, community, or the workplace.
In the category of esteem, AA caregivers more often discussed work productivity, while White caregivers more often discussed experiences of being unproductive at work. This finding may suggest that AA caregivers who are working caregivers view work as a positive aspect that allows them time away from the demands of caregiving, while others find it stressful to balance caregiving and work responsibilities25. With six in 10 of the family caregivers of older adults in the labor workforce25, these findings indicate a need to support working caregivers by promoting self-affirmation of work accomplishments, as well as normalizing and directly addressing the challenges in caregivers with dual responsibilities.
Finally, our study employed information technology to collect qualitative data about the needs of family caregivers whereas previous qualitative research conducted on the needs of AA family caregivers primarily has largely involved data collection through face-to-face interviews. The data collection method through a smartphone-enabled conversational agent was unique to other qualitative studies exploring the needs of AA family caregivers. The advantages of employing a smartphone-enabled intervention to promote self-management of self-care in family caregivers include accessibility and confidentiality. Family caregivers of children or adults with chronic conditions often tend to do caregiving-related duties, limiting their ability to fit self-care into their schedules. Based on the high prevalence of smartphone usage within the AA caregiver population and the time constraint AA caregivers face due to their likelihood of co-residing with the care recipient, providing more caregiving tasks, and difficulty in finding respite care, smartphone-based technologies to support them in self-management of self-care may be ideal. Additionally, due to cultural differences and systemic barriers, AAs are less likely to seek formal health and well-being support where they can make their self-care and well-being need known12. However, smartphone-enabled conversational agents provide anonymity, confidentiality, and objectivity that foster a sense of trustworthiness in the user26. Our findings suggest that AA family caregivers express needs at similar levels as White caregivers when given a platform deemed private and trustworthy. Technology-enabled interventions are much more convenient for family caregivers to receive support in their time of need, particularly in light of the COVID-19 pandemic where family caregivers assume greater caregiving responsibilities27, and are more prone to neglecting their own physical and mental health28. During the COVID-19 pandemic, AAs also faced a resurgence in anti-Asian sentiment, perpetuating the invisibility of AA communities and their health-related needs, leading to worse health outcomes29. To prevent intervention-generated inequalities in the development of digital solutions to support family caregivers, it is imperative that we continue to explore the needs of caregivers in marginalized communities during the design and development stages.
Limitations
The AA population has previously been portrayed as monolithic in research, despite its ethnic and cultural heterogeneity30. ‘Asian’ is an umbrella term encompassing nearly 25 different ethnic groups in the United States. One limitation of this study is that the unique needs of Asian ethnic subgroups may be overlooked due to the aggregation of Asian subpopulations in this sample. The initial plan for this study was to describe family caregivers’ needs from different racial and ethnic backgrounds. However, we faced challenges in recruitment. Despite outreach to multiple ethnic community organizations and the Family Caregiving Alliance, we could not recruit large enough sub-samples to disaggregate the data. Overall, AAs are less likely to participate in health research compared to other racial/ethnic groups, even among ethnic minority groups, which could be attributed to mistrust of research11. Recommendations for recruiting AAs in health research studies involve going to places where AAs congregate, such as Asian supermarkets, faith-based organizations, community centers, and non-profit organizations11. We could not capture the diversity of the AA caregiver population and did not have large subsamples to include other ethnic groups, which could limit the generalizability of the findings. Finally, the inclusion criteria for this study limited involvement from individuals with access barriers, such as those who are limited-English speakers and those without access to a smartphone or connection services.
Despite these limitations, this study provides insight into the needs of AA caregivers compared to White caregivers. Future research is needed to explore further the patterns this study surfaced, which may be conducted through in-depth qualitative interviews with the AA family caregivers. Furthermore, researchers recommended that addressing the underrepresentation and misrepresentation of AAs in health research requires disaggregation of Asian subgroups in research studies31. Future studies should consider this practice to better understand the unique needs of family caregivers from different ethnic backgrounds in AAs.
Conclusion
To our knowledge, this study is the first to utilize data collected through an SMS-based conversational agent to describe and compare the common needs expressed by AA and White family caregivers. AA family caregivers face cultural and systemic barriers to expressing and obtaining support for their needs. This study provided insight into AA and White family caregivers’ common self-care and well-being needs. Findings provide a stepping stone to address the lack of research regarding the self-care needs of AA caregivers, which is the first step towards developing inclusive digital solutions that aim to support the self-management of self-care for family caregivers. AA and White groups of participants differed in subcategories within the physiological, safety, and esteem categories of Maslow’s Hierarchy of Needs. Despite the emotional and mental stress caregiving can cause, both AA and White family caregivers rarely discussed needs related to mental health self-care. Inclusive digital health interventions should consider providing resources for caregivers of ethnic minority groups that help to broaden the caregivers’ understanding of the impacts of cultural values, such as familism and filial piety, on their health and well-being. Resources and support may help AA family caregivers identify, recognize, and respond to their own self-care needs. The volume and quality of data collected in this study may suggest that technology-enabled solutions may be able to bridge that gap for AA family caregivers by providing a platform that is deemed private and trustworthy to express their needs more freely. Yet, further work is needed to explore the data and obtain perspectives of AA family caregivers in utilizing a conversational agent. Disaggregation of the AA and White subpopulations in future studies may reveal varying perspectives of overall needs and digital tools for support. In addition, the utilization of advanced technologies such as automated conversational agents that are culturally tailored has the potential to address health disparities among caregivers from different cultural and ethnic backgrounds.
References
- 1.The National Alliance for Caregiving. Caregiving in the U.S. 2020 [Internet] 2020 [cited 2020 May 11]. Available from: https://www.caregiving.org/caregiving-in-the-us-2020/
- 2.Sit HF, Huang L, Chang K, Chau WI, Hall BJ. Caregiving burden among informal caregivers of people with disability. Br J Health Psychol. 2020;25(3):790–813. doi: 10.1111/bjhp.12434. [DOI] [PubMed] [Google Scholar]
- 3.Roth DL, Fredman L, Haley WE. Informal caregiving and its impact on health: a reappraisal from population-based studies. Gerontologist. 2015;55(2):309–19. doi: 10.1093/geront/gnu177. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 4.Bureau USC. US Census Bureau QuickFacts: United States. 2019.
- 5.Schafer D, Chun H, Lum W. The emerging needs of Asian Americans and Pacific Islander older adults. [Internet] 2017. Available from: https://www.napca.org/wp-content/uploads/2017/10/NAPCA-The-Emerging-Needs-of-AAPI-Older-Adults_Fin al-Report_Feb2017.pdf.
- 6.AARP, National Alliance for Caregiving. Caregiving in the U.S. Washington, DC: AARP; 2015; 2015. [Google Scholar]
- 7.Pinquart M, Sörensen S. Ethnic differences in stressors, resources, and psychological outcomes of family caregiving: a meta-analysis. The Gerontologist. 2005 Feb;45(1):90–106. doi: 10.1093/geront/45.1.90. [DOI] [PubMed] [Google Scholar]
- 8.Sue S, Yan Cheng JK, Saad CS, Chu JP. Asian American mental health: a call to action. Am Psychol. 2012 Oct;67(7):532–44. doi: 10.1037/a0028900. [DOI] [PubMed] [Google Scholar]
- 9.Kim SB, Lee YJ. Factors associated with mental health help-seeking among Asian Americans: a systematic review. J Racial Ethn Health Disparities [Internet] 2021 Jun 1 [cited 2022 Mar 9]. Available from: [DOI] [PMC free article] [PubMed]
- 10.Parmar J, Anderson S, Abbasi M, Ahmadinejad S, Brémault-Phillips S, Chan K, et al. Support for family caregivers: A scoping review of family physician’s perspectives on their role in supporting family caregivers. Health Soc Care Community. 2020;28(3):716–33. doi: 10.1111/hsc.12928. [DOI] [PubMed] [Google Scholar]
- 11.Liu Y, Elliott A, Strelnick H, Aguilar-Gaxiola S, Cottler LB. Asian Americans are less willing than other racial groups to participate in health research. J Clin Transl Sci. 2019 Jun;3(2-3):90–6. doi: 10.1017/cts.2019.372. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 12.Miyawaki CE. A review of ethnicity, culture, and acculturation among Asian caregivers of older adults (2000-2012) SAGE Open. 2015 Feb;5(1):10.1177/2158244014566365. doi: 10.1177/2158244014566365. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 13.Liu Z, Heffernan C, Tan J. Caregiver burden: A concept analysis. Int J Nurs Sci. 2020 Oct 10;7(4):438–45. doi: 10.1016/j.ijnss.2020.07.012. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 14.Kearns WR, Kaura N, Divina M, Vo C, Si D, Ward T, et al. A wizard-of-oz interface and persona-based methodology for collecting health counseling dialog. Extended Abstracts of the 2020 CHI Conference on Human Factors in Computing Systems. 2020. pp. 1–9.
- 15.Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res. 2005 Nov;15(9):1277–88. doi: 10.1177/1049732305276687. [DOI] [PubMed] [Google Scholar]
- 16.Maslow AH. A theory of human motivation. Psychol Rev. 1943;50(4):370–96. [Google Scholar]
- 17.Bayoumi M. Identification of the needs of haemodialysis patients using the concept of Maslow’s hierarchy of needs. J Ren Care. 2012 Mar;38(1):43–9. doi: 10.1111/j.1755-6686.2011.00237.x. [DOI] [PubMed] [Google Scholar]
- 18.Zalenski RJ, Raspa R. Maslow’s hierarchy of needs: a framework for achieving human potential in hospice. J Palliat Med. 2006 Oct;9(5):1120–7. doi: 10.1089/jpm.2006.9.1120. [DOI] [PubMed] [Google Scholar]
- 19.Bazeley P. Integrating Analyses in Mixed Methods Research. SAGE Publications; 2018. From codes and counts to content analysis and “big data.”. [Google Scholar]
- 20.Medic G, Wille M, Hemels ME. Short-and long-term health consequences of sleep disruption. Nat Sci Sleep. 2017 May 19;9:151–61. doi: 10.2147/NSS.S134864. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 21.Leggett AN, Morley M, Smagula SF. “It’s been a hard day’s night”: sleep problems in caregivers for older adults. Curr Sleep Med Rep. 2020 Mar 1;6(1):1–10. doi: 10.1007/s40675-020-00164-0. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 22.Furlong KE, Wuest J. Self-care behaviors of spouses caring for significant others with Alzheimer’s disease: The emergence of self-care worthiness as a salient condition. Qual Health Res. 2008 Dec 1;18(12):1662–72. doi: 10.1177/1049732308327158. [DOI] [PubMed] [Google Scholar]
- 23.Pharr JR, Dodge Francis C, Terry C, Clark MC. Culture, caregiving, and health: exploring the influence of culture on family caregiver experiences. ISRN Public Health. 2014 Mar 26;2014:e689826. [Google Scholar]
- 24.Schulz R, Beach SR, Cook TB, Martire LM, Tomlinson JM, Monin JK. Predictors and consequences of perceived lack of choice in becoming an informal caregiver. Aging Ment Health. 2012 Aug 1;16(6):712–21. doi: 10.1080/13607863.2011.651439. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 25.Feinberg LF. The dual pressures of family caregiving and employment [Internet] AARP. [cited 2022 Mar 9]. Available from: https://www.aarp.org/ppi/info-2016/the-dual-pressures-of-family-caregiving-and-employment.html.
- 26.Abd-Alrazaq AA, Alajlani M, Ali N, Denecke K, Bewick BM, Househ M. Perceptions and opinions of patients about mental health chatbots: scoping review. J Med Internet Res. 2021;23(1):e17828. doi: 10.2196/17828. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 27.Beach SR, Schulz R, Donovan H, Rosland AM. Family caregiving during the COVID-19 pandemic. The Gerontologist. 2021 Jul 13;61(5):650–60. doi: 10.1093/geront/gnab049. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 28.NORC at the University of Chicago. Maintaining physical and mental well-being of older adults and their caregivers during public health emergencies. [Internet] 2021. Available from: https://www.norc.org/PDFs/Maintaining%20Physical%20and%20Mental%20Well/OACExecutiveSummary.pdf.
- 29.Santos PMG, Dee EC, Deville C., Jr Confronting anti-Asian racism and health disparities in the era of COVID-19. JAMA Health Forum. 2021 Sep 24;2(9):e212579. doi: 10.1001/jamahealthforum.2021.2579. [DOI] [PubMed] [Google Scholar]
- 30.Nugraheni S, Hastings J. Family-based caregiving: does lumping Asian Americans together do more harm than good? J Soc Behav Health Sci. 2021 Mar 17;15(1):87–102. [Google Scholar]
- 31.Shah NS, Kandula NR. Addressing Asian American misrepresentation and underrepresentation in research. Ethn Dis. 2020 Sep;30(3):513–6. doi: 10.18865/ed.30.3.513. [DOI] [PMC free article] [PubMed] [Google Scholar]