Mode of Program Participation

Community Organizing and Educational Programming

Participation Type

Paper

Presentation #1 Title

Honoring Life’s Journey: Community-Academic Partnership for End-of-Life Care in Rural Appalachia

Presentation #1 Abstract or Summary

Previous research found that rural Appalachian persons in East TN prefer to die at home, yet have limited knowledge and use of supportive end-of-life (EOL) healthcare services. This creates vulnerabilities and challenges for people, families, and community members. We formed a community-academic partnership with leaders and residents in a rural Appalachian county and university faculty and students. We used expertise of families, churches, community members, healthcare providers, and academics to develop culturally-relevant materials for educating about EOL. Community-academic partners co-created teaching materials which were refined by a graphic artist/educational specialist. Award-winning videographers captured the personal stories of three community members to teach: inter-generational aspects of EOL; hospice support for families caring for loved ones; and examples of how community members can support one another during EOL. As trusted members of the community, lay persons will use train-the-trainer format to disseminate teaching. In year two of a three-year project plan, we are testing training materials and methods for cultural acceptability and usability. Our desire is to provide education that contributes to quality of life and a dignified death experience for people, their families, and the community at large. Since death is a universal human experience, our project promotes understanding death as a natural part of life and EOL knowledge as an essential part of health. During our presentation, we will share lessons learned from our community-academic partnership, educational materials and methods, and engage participants in dialogue about using partnerships to address challenges and promote health and wellbeing in other Appalachian communities.

At-A-Glance Bio- Presenter #1

Sandra J. Mixer, PhD, RN, CTN-A is an Associate Professor at the University of Tennessee-Knoxville, College of Nursing. Dr. Mixer’s research includes care for underserved populations focusing on culturally congruent end-of-life care. She is engaged in community-academic and practice partnerships with faith and community leaders, residents, and interdisciplinary team members helping families understand and use EOL care services and advance care planning in ways that are meaningful and beneficial to them.

At-A-Glance Bio- Presenter #2

Wayne King is Vice President of Business Development for High Five Solutions, a youth development life skills training program helping youth return to meaningful engagement in their schools and community. He is also pastor of New Salem Baptist Church in Scott County, Tennessee, in rural Appalachia. Passionate about serving his community, Mr. King serves on numerous boards and engages in activities that foster personal, professional, and community-wide growth.

At-A-Glance Bio- Presenter #3

Dr. Mary Lynn Brown, PhD, RN, ACNS-BC, CNE, CHSE is Clinical Associate Professor at the University of Tennessee-Knoxville, College of Nursing. Dr. Brown coordinates the adult health nurse practitioner and clinical nurse specialist programs. She has years of experience supporting hospitalized patients and families as they make palliative and end-of-life care decisions. Dr. Brown is active in her community working to improve the health and wellbeing of all citizens.

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Honoring Life’s Journey: Community-Academic Partnership for End-of-Life Care in Rural Appalachia

Previous research found that rural Appalachian persons in East TN prefer to die at home, yet have limited knowledge and use of supportive end-of-life (EOL) healthcare services. This creates vulnerabilities and challenges for people, families, and community members. We formed a community-academic partnership with leaders and residents in a rural Appalachian county and university faculty and students. We used expertise of families, churches, community members, healthcare providers, and academics to develop culturally-relevant materials for educating about EOL. Community-academic partners co-created teaching materials which were refined by a graphic artist/educational specialist. Award-winning videographers captured the personal stories of three community members to teach: inter-generational aspects of EOL; hospice support for families caring for loved ones; and examples of how community members can support one another during EOL. As trusted members of the community, lay persons will use train-the-trainer format to disseminate teaching. In year two of a three-year project plan, we are testing training materials and methods for cultural acceptability and usability. Our desire is to provide education that contributes to quality of life and a dignified death experience for people, their families, and the community at large. Since death is a universal human experience, our project promotes understanding death as a natural part of life and EOL knowledge as an essential part of health. During our presentation, we will share lessons learned from our community-academic partnership, educational materials and methods, and engage participants in dialogue about using partnerships to address challenges and promote health and wellbeing in other Appalachian communities.