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  • Title

    Developing a Culturally Congruent End-of-Life Care Intervention among Rural Appalachians
  • Contact
    Sandra Mixer
  • Country
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  • Project Date
    March 2014 - present
  • Abstract

    Specific Aims While death is a universal human experience, the process of dying amplifies peoples’ cultural similarities and differences 1-2. Professional nurses have a duty to provide culturally-congruent care, care that is satisfying and beneficial to those served 3-5. Knowing the values, beliefs, and practices of patients and families experiencing the challenges of end-of-life care is essential to delivering quality health care, addressing health disparities, and achieving “dignified death” 6-13. Yet, little is known about culturally congruent end-of-life care among rural Appalachians. Appalachian people have a unique geographic, cultural, and economic heritage 14-15. They represent a large group of Americans who have been traditionally under-represented in healthcare studies in general, and in cultural care research specifically. As a group, they have been misunderstood, ridiculed and stereotyped, and called “stupid,” “rednecks,” and “hillbillies”. Appalachians’ rich cultural values and beliefs include a sense of belonging, love of “our mountains”, strong family ties, firm faith, hard work, fierce independence, self-reliance, and pride 14, 16. All 36 counties in the Appalachian region of East Tennessee are HRSA designated as medically underserved, and 22 of these counties are also designated as health professional shortage areas 17. The percentage of the population living below the poverty level in these counties is 19%, compared to 15.8% in Tennessee overall and 13.0% in the United States 18. Limited access to healthcare services, specifically end-of-life care, in this rural setting creates vulnerability 19-20. The purpose of this study is to describe generic (folk) and professional (nursing) factors which health care providers can apply to promote culturally-congruent care for rural Appalachian people at end-of-life. Aim 1. Describe the uses and meanings of folk care among Appalachian patients at end-of-life and their families from an emic (insider) perspective within their home and community contexts. Aim 2. Compare the uses and meanings of professional nursing care with Appalachian patients at end-of-life from both emic (insider) and etic (nurse) perspectives, with a particular focus on uses of the theoretical constructs of culture care preservation/maintenance, accommodation/negotiation, and repatterning/restructuring. Aim 3. Explore patterns of support among patients at end-of life and their family caregivers including their emic perceptions of interdisciplinary health care team members.

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