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Telling the story of palliative care: SDSU researchers and tribal health leaders working together to get more people talking about palliative care

Researchers from South Dakota State University are working to get the message out about palliative care for Native Americans in western South Dakota.
Mary Isaacson, Ph.D., an associate professor in the College of Nursing, and Jenn Anderson, Ph.D., an associate professor in the School of Communication and Journalism, will both serve as principal investigators for a $368,794 grant from the National Institute for Nursing Research aimed at creating such messages. 
“Access to high-quality healthcare is a pressing issue in South Dakota, especially in tribal communities,” said Jason Zimmerman, Ph.D., associate dean for research for the College of Arts, Humanities, and Social Sciences. “Dr. Anderson and Dr. Isaacson are showing how interdisciplinary research can improve the quality of life of our citizens, and their NIH funding shows that others recognize the importance of their work as well.” 
Notably, Isaacson and Anderson are the first researchers from SDSU’s College of Nursing and College of Arts, Humanities, and Social Sciences, respectively, to serve as principal investigators on a grant from any institute within the National Institutes of Health. 
“The College of Nursing is thrilled for this NIH grant. Drs. Isaacson and Anderson are modeling the way to secure federal funding,” said Sarah Mollman, Ph.D., associate dean for research for the College of Nursing. “We are even more excited for the impact their work will have on the people in South Dakota.” 
Over the course of the two-year project, Isaacson and Anderson will work with Kelly Le Beaux and Gina Johnson from the Great Plains Tribal Leaders Health Board, to develop culturally-responsive messages about palliative care. Le Beaux and Johnson will serve as co-investigators on the project, overseeing outreach and recruitment efforts.
“The Great Plains Tribal Leaders Health Board and the Prevention Program are excited to be partnering with SDSU on this NIH grant,” said Le Beaux. “Our tribal communities will benefit from these palliative care initiatives, providing quality of life to our relatives living with a terminal illness or chronic disease.”
Palliative care services seek to reduce suffering and improve the quality of life of patients dealing with serious health conditions, often at the end of their lives. Palliative care offers the opportunity for patients to experience their final days in peace, often in their homes, surrounded by loved ones. Even though palliative care can be tremendously valuable, most people know very little about it, and it can be a difficult thing to talk about. 
“That’s why it’s so important to get the word out about palliative care,” Isaacson said. “So that people understand what it is, can talk with their loved ones about receiving that care, and most importantly, receive that care if needed.” 
Isaacson is an expert in palliative care nursing and has worked for many years to develop palliative care capacities with the Cheyenne River, Pine Ridge, and Rosebud reservation communities—who are all involved with this project. Isaacson is leading the first phase of the project, which involves listening to community members’ experiences with, and stories about, palliative and end-of-life care.  Isaacson will lead talking circles, where community members can tell their stories in a small group, and will work with the community advisory boards from each reservation.
“Community advisory boards, made up of tribal leaders, will bring a cultural nuance to the process that Jenn and I may miss,” Isaacson said. “They will ensure that our approaches and outputs are culturally-responsive, accurate, and authentic.” 
Anderson is an expert in health communication messaging and campaigns. She will build on what was learned in phase one, as she leads phase two of the project, where the messages will be created and tested.  Since storytelling is a valued aspect of Native American culture, Anderson will use the narrative as culture-centric health promotion model as a framework for weaving together community members’ experiences and perspectives into a compelling and persuasive story, or narrative. 
“The idea is for folks to be transported into the narrative to really connect with that story,” Anderson said. “Once they connect with the story, the hope is that they will then have more knowledge of palliative care and be more interested in talking about it with their families or loved ones.” 
The team will use an experimental design to test whether these culture-centric narrative messages are more effective than generic messages on the same topic. The goal is for the culture-centric narrative messages to significantly improve Native Americans’ awareness and knowledge of palliative care, and to increase their willingness to discuss it with loved ones.
“Our long-term goal is to use these messages to develop a full-scale health communication campaign that measures the effects of the campaign on discussion about, and use of, palliative care among Native American communities within South Dakota and beyond,” Anderson said. Additionally, Anderson believes their findings can serve as a blueprint for the South Dakota Department of Health, and others, to create similar interventions using culture-centric messaging. 
In terms of impact, Isaacson believes this project will continue to strengthen the relationship between SDSU and the tribal communities in the state. As Isaacson notes, “Relationships really are at the heart of any research partnership, especially with Native American communities.” 
Ultimately, Isaacson and Anderson hope that this project will lead more Native Americans to consider choosing palliative care, because such care truly improves the quality of life for people facing a life-limiting illness. 
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