Approximately 10,000 Americans die with an HIV/AIDS diagnosis each year, and many of these patients lack access to the care they need at the end of their lives. A group of nursing professors at the University of Tennessee, Knoxville, is embarking on a study to try to change this.
The study team—Sadie Hutson, associate professor; Ken Phillips, professor and associate dean of research in the College of Nursing; Lisa Lindley, assistant professor; and Joanne Hall, professor along with Susan Gaskins, professor at the University of Alabama, Tuscaloosa—has received an award from the National Institutes of Health for an anticipated total of more than $420,000 over two years to determine the end-of-life needs for people living with HIV/AIDS in the Appalachian regions of Tennessee and Alabama.
"End-of-life planning and care are especially critical in high prevalence areas of the United States, such as Southern Appalachia," said Hutson, principal investigator for the project. "Yet, very little is known about the needs or the availability of end-of-life services for those in this region."
Through one-on-one interviews and a survey, the researchers will examine factors that influence end-of-life needs, such as a general lack of health services and infrastructures, pervasive poverty, unemployment, rural and mountainous geographic terrain, uninsured or underinsured status, stigma and inadequate education. They will also determine which services, including hospice and palliative care, specialized health care and psychosocial resources, are available to patients.
"This study is one of the first to investigate the contribution of the unique Appalachian culture and beliefs about end-of-life care in an area that has historically been underserved with regard to health care services," said Hutson.
The end result also will include maps, developed with the use of Geographic Information Systems strategies, which will show where services exist and illuminate disparities in the quantity, quality and access to the services. The researchers will then determine targeted interventions to address discrepancies between perceived needs and available services.
"This study will set the stage for developing and testing interventions aimed at increasing accessibility, cultural appropriateness, and acceptability and utilization of services, as well as increasing provider awareness of the particular needs of the population and its subgroups," said Hutson.
The study is aided by consultants including Maureen Lyon of the National Children's Hospital in Washington, D.C.; Ashley Golden, an epidemiologist and independent consultant; Jonathan Moorman of East Tennessee State University; and Abbas Tavakoli of the University of South Carolina.