By Erica Techo
There are approximately 3.2 million family members in the U.S. caring for individuals with cancer. Along with providing emotional and physical support to patients, most caregivers are also involved in the patient’s health care decisions, including treatment options, surgery, location of care and more. This involvement makes it especially important for caregivers to be prepared to effectively support patients in their health care decision making.
Through a five-year, $3.6 million R01 grant from the National Cancer Institute, UAB School of Nursing Assistant Professor J. Nicholas Dionne-Odom, PhD, RN, ACHPN, FAAN, will build on previous research and test components of CASCADE (Care Supporters Coaches to be Adept Decision partners), a lay navigator-led, telehealth early palliative care intervention to train advanced cancer caregivers how to provide decision support to patients.
“Through this project, we’re testing different versions of CASCADE to determine which combination of the program’s components works best,” said Dionne-Odom. “Traditionally, when we test interventions, we test them as a package. When we do that, even when we get positive results, we don’t always know which components of the intervention are most effective.”
By studying different combinations of this program, it becomes possible to determine which components are most effective. This enables the research team to retain or eliminate components of the intervention to maximize effectiveness and efficiency and minimize resource use and costs.
In his early research, Dionne-Odom studied surrogate decision making in the ICU—decisions that oftentimes involved deciding about withholding or withdrawing life sustaining treatments at a patient’s end of life. Those circumstances resulted in families having to make enormously difficult decisions that they were often not prepared for. That is why Dionne-Odom now focuses on training family caregivers in decision-making skills much earlier on in the serious illness trajectory.
“That helped me decide early on to teach these skills much, much sooner, way before one would be in that role of surrogate decision making, enabling people to not only prepare for the role, but also to support the patient through the many decisions that they face during serious illness before the very end of life,” he said.