By Erica Techo
Palliative care addressing both patient and family needs is becoming more widely used in the United States, but those who still lack access include many of the 2.8 million cancer family caregivers, especially those from underserved backgrounds living in the U.S. South.
University of Alabama at Birmingham School of Nursing Assistant Professor J. Nicholas Dionne-Odom, PhD, RN, has received a $3.2 million, five-year R37 grant from the National Cancer Institute to study the effectiveness of Project ENABLE Cornerstone, a lay navigator-led, community-based palliative care intervention for rural and African-American family caregivers in the Southeast.
“Family caregivers are a massive population that deliver health care in our country, and it is important to focus on their ability to access palliative care as well as what their family member receives,” Dionne-Odom said. “These caregivers are often at risk for health issues themselves, and it important to overall public health to find ways to better support these individuals.”
Alabama and Mississippi are some of the lowest performing states, with fewer than 40 percent of hospitals reporting having palliative care teams and large rural and underserved populations. Dionne-Odom said accessing palliative care early in the disease process can allow more time for individuals and families to process a serious illness and plan for the future. It also helps them plan in advance for difficult medical decisions that can be difficult to make in the moment, when emotions are running high.
“Typically, underserved groups access palliative care very late in serious illness, often in the last days or weeks of life,” Dionne-Odom said. “These populations tend to receive more aggressive care at the end of life, including more invasive procedures or in a setting such as an intensive care unit. While that intensity of care is desired by and appropriate for some, for others, it may reflect that they never had access to palliative care early on to help them prepare and think about the care they wish to receive in the last weeks and days of life.”
ENABLE Cornerstone aims to improve the quality of life of family caregivers of patients with newly-diagnosed advanced cancers through health coaching techniques and distress screenings. In the intervention, lay navigators conduct six in-person or virtual sessions, plus monthly follow-up, to provide tools for stress management, getting and asking for help, improving caregiving skills and decision making.
Past interventions have studied the effectiveness of advanced practice nurses performing the intervention, and while successful, Dionne-Odom said lay navigators are a more available workforce. They are also connected to the communities with which they work. The intervention can be completed in-person or virtually, allowing for a more accessible form of palliative care.
“It is important for the lay navigators to be connected to the communities they serve, because that enables them to better communicate principles of palliative care,” he said. “It is important for these concepts to be communicated in a culturally acceptable and appropriate manner, and delivered at the appropriate pace, for different populations in order to have the most success.”
During the five-year study, Dionne-Odom will look at the efficacy and cost effectiveness of ENABLE Cornerstone and determine if it helps improve quality of life for family caregivers.
“We believe ENABLE Cornerstone makes palliative care access more possible because it uses a lay workforce, can be done in person or over the phone, and is manualized,” Dionne-Odom said. “The intervention is very scalable and can reach a vulnerable and underserved population. UAB is also an ideal academic environment for this study because it is located in the Southeast and serves the exact population we’re hoping to reach. It’s also a robust academic resource center, so all the resources one needs are here.”
R37 grants are awarded to early stage investigators and aim “to provide long-term support to investigators whose research competence and productivity are distinctly superior and who are likely to continue to perform in an outstanding manner,” according to the National Institutes of Health.
