Abstract
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.