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Background Many Americans are informal caregivers providing unpaid care for their loved ones living with chronic conditions, such as dementia and heart failure. As the US population continues to age and live longer with more complex chronic conditions, informal caregivers play an increasingly important role in the care of older adults with functional impairment and multiple comorbidities. Caregivers face many challenges in managing the health of themselves and their loved ones, including physical, emotional, and financial burdens, which may potentially vary by race and ethnicity. Therefore, it is critical to develop culturally tailored solutions, such as smart technology, aimed at improving the quality of life of informal caregivers and care recipients from diverse backgrounds. Methods Data were collected from a convenient sample of 69 informal caregivers in Texas who were members or volunteers for either the International Buddhist Progress Society-Dallas (IBPS Dallas) or University of Texas Medical Branch (UTMB). Caregivers answered questions about their caregiving experiences, including the type of care they provided, challenges they faced, and lessons learned. Responses were stratified by race/ethnicity (White, Hispanic, or Asian American) to assess for potential cultural differences in caregiving experiences. A chi-squared test and one-way analysis of variance (ANOVA) were conducted. Results White, Hispanic, and Asian American caregivers all reported high non-medical related needs. White, Hispanic, and Asian American care recipients all had a high degree of neurological disease and functional impairment. White and Hispanic caregivers were also more likely to offer emotional support (p=0.007) and financial support (p=0.025) than Asian American caregivers. Asian American caregivers reported greater worry about the health-related knowledge of their family members (p=0.040) than White and Hispanic caregivers. Hispanic (18.8%) and Asian American caregivers (12.5%) reported the least knowledge of caregiving-related government policies than White caregivers (43.2%) (p=0.025). Hispanic (18.8%) and Asian American caregivers (18.8%) also reported the least knowledge of available support programs and services for care recipients (p=0.001). Conclusions White, Hispanic, and Asian American informal caregivers vary in their types of worries, care provided, and challenges faced. Our study found that Asian American caregivers reported greater worry about the health-related knowledge of their family members than White and Hispanic caregivers. White caregivers were better at navigating government resources and caregiver support programs than Hispanic and Asian American caregivers. While race and ethnicity are potential factors for these observed differences, several other factors may have played a role, including age, gender, income, education, patient diagnosis, and disease severity. Future research should consider these factors and evaluate a larger and more diverse sample for more definitive racial and ethnic comparisons. Understanding disparities in caregiving experiences is a critical initial step to developing culturally appropriate interventions to reduce caregiving burden and promote the health and well-being of both patients and their informal caregivers from diverse backgrounds.
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INTRODUCTION: Aging is associated with significant alterations in physical, cognitive, and emotional functions, predisposing older adults to multimorbidity and functional dependence that necessitate assistance with the activity of daily living (ADL) and medical care from caregivers. With a substantial increase in the aging population comes a growing demand for caregivers, particularly informal caregivers who provide unpaid care to older adults with complex needs. However, they face substantial physical, emotional, and financial burdens as they balance caregiving with their family and job demands. AIM: This study aimed to explore key challenges faced by caregivers and the resources they need to address their caregiving burden. Additionally, we wanted to identify whether the number of years of caregiving is associated with their burden. These study findings will inform the design and development of our smartphone app which aims to alleviate the burden of diseases for older adults and the burden of caregiving for caregivers. METHODS: From October to December 2022, we invited 80 self-reported caregivers for an anonymous online survey. The caregivers were located in three cities (Galveston, Houston, and Dallas in Texas) and were affiliated with the International Buddhist Progress Society-Dallas (IBPS Dallas) and the University of Texas Medical Branch (UTMB) Osher Lifelong Learning Institute (OLLI). The collected data were subjected to content analysis through systematic examination for meaningful patterns, themes, and insights. Individual characteristics and caregiving experiences were divided by years of care: 0-4 vs. 5+ years to investigate whether the caregiving burden was affected by the duration of caregiving. RESULTS: The results showed several important insights, including gender dynamics and traditional norms, the advanced age of caregivers, and the prevalent health conditions they are managing. Caregivers' roles ranged from medical (insurance and medication assistance, etc.) at 63.8% to the provision of non-medical related resources (basic needs, utility, transportation, financial assistance, etc.) at 96.3%. Caregiving is also associated with some positive outcomes, such as changes in knowledge and skills (77.5%) with more confidence in ADL support tasks and a deepening of caregiver/care recipient dyad relationships (56.3%). Some faced challenges in navigating complex healthcare and social service systems and others experienced neglect and received inadequate support from the government-supported social services (33.8%). However, there is no significant variation between those with 0-4 and 5+ years of experience across all identified themes, suggesting that the burdens and resource needs of caregivers can manifest early on and are likely to persist beyond the five-year mark. CONCLUSION: Our findings reveal that the number of caregiving years does not significantly influence the types of caregiving burden experienced by caregivers or the resources they require. This indicates the need for providing long-term support to older adults with chronic conditions from the early stage, while also emphasizing the critical role of immediate assistance for caregivers to alleviate caregiving burden. A free-of-charge technology like our smartphone app has the potential to effectively reduce stress for caregivers, offering them support at any time and place. Future studies will focus on evaluating the outcomes of caregivers after utilizing our app.
RESUMO
BACKGROUND: The use of smartphones and other digital devices (such as tablets and smartwatches) is important for the aging population to enhance and optimize communications with caregivers, families, friends, and providers. It also provides a platform for app-based activities to promote mental, physical, spiritual, and social well-being and virtual social connectedness. We, therefore, examined types of digital devices and categories of smartphone functions used by caregivers and care recipients in comparison to those without any caregiving roles. METHOD: The project team has developed a smartphone app based on Buddhist meditative practice principles for the enhancement of the physical, mental, cognitive, and emotional well-being of older adults and their caregivers and tested it in Galveston, Houston, and Dallas, TX. The study comprised a convenient sample of older adults, including members or volunteers of the International Buddhist Progress Society-Dallas (IBPS Dallas) and the University of Texas Medical Branch Osher Lifelong Learning Institute (UTMB OLLI). The survey focused on people who were 55 years and older (n = 219), with 177 valid responses (~80.8%) meeting the study's inclusion criteria. The survey collected data on (1) caregiving role, (2) demographic characteristics and caregiving concerns, and (3) types of devices, functions, and utilization. Descriptive analysis and logistic regression were used to describe and compare patterns of smartphone function/use by the different groups, i.e., caregivers, care recipients, and neither. RESULTS: All of our survey respondents were 55 years and older, and among them, 17.5% were caregivers, 9.1% were care recipients, and 73.4% did not have any role. The majority of the caregivers were females (80.6%), and the average age of their care recipients was 66 years. The care recipients in our sample reported that the average age of their caregiver is only 55 years. Around three-fourths of caregivers reported that they have an app related to health or they are willing to use a health-related app, 32% of them use smart home appliances, whereas only 16% of people who are neither caregivers nor care recipients use such apps. Approximately 42% of caregivers reported taking care of their parents or parents-in-law, and their major concerns are about maintaining their income, scheduling tasks, and updating their knowledge as needed to better care for their loved ones. People use texting or messaging the most. However, the second and third highest utilization are different. The "neither" group significantly spends more time checking email and watching TV; the care recipients spend more time reading and watching TV (sedentary activities); the caregiver group spends more time on phone calls and listening to music. CONCLUSIONS: Findings of different patterns of digital device use exist between caregivers, care recipients, and the "neither" group, with 75% of caregivers using a digital device app related to health or reporting willingness to use a health-related app developed from our study. Our findings of their caregiving experiences might also inform the design of different intervention programs aimed at promoting mental, physical, and social well-being, improving quality of life while reducing disease/disability burden for older adults, and preventing burnout among caregivers.
