A team of researchers, led by Robert J. Lucero, Ph.D., MPH, RN, Assistant Professor at the Columbia University School of Nursing, will develop and test a web-based intervention to facilitate the health and healthcare management for Hispanic patients with dementia and their caregivers.
The goal for the Family-Health Information Management System (Family-HIMS) is help improve the Hispanic caregiver's ability to manage information associated with the healthcare needs of a patient with dementia. The Family-HIMS is intended to enhance the users' ability to access, visualize, organize, and coordinate health information and health care needs of dementia patients and their caregivers.
"The aim of this health information management system is to develop a web-based tool that conforms to the needs of the Hispanic caregiving community and to evaluate its impact on helping caregivers manage their health and the health of the person they are caring for," says Lucero, who is basing his approach on a similar web-based tool he developed to improve the self-assessment and management for falls in community dwelling older adults.
Lucero and his team will build on previous experience of successfully designing and developing consumer-based health information technology. English- and Spanish-speaking family caregivers will engage in the design, development, and testing of the Family-HIMS to help researchers incorporate differences among the information-seeking and management behaviors of Hispanic caregivers.
The Family-HIMS project is one of three components in a larger research effort funded by the National Institutes of Health/National Institute of Nursing Research. The New-York-City Hispanic-dementia-caregiver Research Program (NHiRP) is a multifaceted, multi-institutional initiative, combining the expertise of its principal investigators in the areas of minority health, epidemiology, clinical trials, mental health and bioinformatics.
The two additional NHiRP components are to: conduct a five-year longitudinal study of mid and long-term outcomes of Hispanic caregivers who participated in a randomized trial of the NYU Caregiver Intervention; and create a registry of Hispanic caregivers to study socio-demographic factors in the context of caregiving-related needs.
As part of the longitudinal study, the study team will observe at one and five years whether caregivers who received the NYU Caregiver Intervention had significantly fewer depressive symptoms and were less burdened than caregivers who did not receive the intervention. The caregiver registry will be comprised of 300 individuals who are primarily responsible for the healthcare needs of a patient with dementia.
A large-scale interviewed-based survey will be conducted to examine the interplay of key socio-demographic characteristics, caregiver burden, stress, and depressive symptoms. These factors will be measured against such characteristics including sex, family position, employment, acculturation, and socioeconomic status.
"Information on caregiver interventions for Hispanics is limited," says Lucero. "This research program is one of the largest studies of its kind to study the long-term effectiveness of culturally-sensitive counseling and support groups, and test a novel technology-based intervention that supports education and health management for Hispanic caregivers."
Along with Lucero, the program is co-led by Jose Luchsinger, MD, MPH, associate professor of medicine and epidemiology at Columbia University Medical Center; and Mary Mittelman, DrPH, professor of psychiatry at NYU Langone Medical Center.