KINGSTON, R.I. — July 11, 2022 — About 12 million adults in the United States are living with serious illness that carries a high risk of mortality and puts great strain on family caregivers. That strain is exacerbated in cultural-minority families facing inequities of care that are ingrained in society, limiting the ability for family caregivers to receive palliative care or access the health care system at all.
Structural inequity and racial or ethnic residential segregation may affect serious illness outcomes by limiting access to palliative care and limiting the capacity of family caregivers to engage with the healthcare system. Few studies have been done to highlight racism’s impact on family caregivers. To address this gap, University of Rhode Island College of Nursing Professor Susan Desanto-Madeya aims to disentangle the relationships between segregation, neighborhood deprivation and healthcare utilization to determine whether racial inequities, not patient mistrust, are the primary barriers to equitable palliative care and health outcomes.
The study is funded by a RO1 grant from the National Institutes of Health. Research Project Grants (RO1s), among the most prestigious federal research grants, provide support for health-related research and development based on the mission of the NIH. It is the fourth RO1-funded study currently under way in the College.
“Serious illness is a condition that carries a high risk of mortality and can negatively impact the person’s quality of life and excessively strains their family caregivers,” Desanto-Madeya said. “Structural inequities and neighborhood racial/ethnic segregation may affect serious illness outcomes by limiting access to palliative care, a specialty that focuses on optimizing the quality of life for persons living with serious illness and their family caregivers, and limiting the capacity for family caregivers to engage with the healthcare system. Family caregivers are critical for this population as they assist with complex decision-making, care coordination, and patient advocacy.”
Desanto-Madeya will focus her three-part study on the state of Massachusetts, a diverse state with large limited-resource communities and a population that includes about 30 percent persons of color (POC). Using data from the All Payer Claims Database, she will analyze the rates of serious illness, access to palliative care, availability of caregiver resources, individual utilization of health care facilities, and the ultimate health outcomes in specific neighborhoods with high rates of ethnic minority families.
Next, Desanto-Madeya will conduct case studies of hospitals to characterize how hospital cultures support or constrain caregiver engagement for people with serious illness from different communities. Finally, the researchers will consult with community representatives to recommend culturally appropriate solutions to improve equity in caregiver engagement for serious illness.