EXPLORING END-OF-LIFE CARE: ACCESS AND PERSPECTIVES AMONG THE A’ANININ AND NAKODA NATIONS
Background: Native Americans experience higher mortality due to serious illnesses compared to all other racial and ethnic groups in the United States. There is growing recognition of the need for culturally appropriate and acceptable end-of-life care for reservation-based, Native American communitie...
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Johns Hopkins University
2023
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ftjhuniv:oai:jscholarship.library.jhu.edu:1774.2/68201 2023-09-26T15:20:13+02:00 EXPLORING END-OF-LIFE CARE: ACCESS AND PERSPECTIVES AMONG THE A’ANININ AND NAKODA NATIONS Nelson, Katie E Thorpe, Roland Wright, Rebecca Davidson, Patricia M Brockie, Teresa Barlow, Allison Ferrell, Betty 2023-03-28 application/pdf http://jhir.library.jhu.edu/handle/1774.2/68201 en_US eng Johns Hopkins University USA http://jhir.library.jhu.edu/handle/1774.2/68201 Palliative care health care access Native American Thesis text 2023 ftjhuniv 2023-08-28T17:58:44Z Background: Native Americans experience higher mortality due to serious illnesses compared to all other racial and ethnic groups in the United States. There is growing recognition of the need for culturally appropriate and acceptable end-of-life care for reservation-based, Native American communities. However, many continue to experience myriad challenges making access to services difficult; and as such, receive high-intensity interventions near end-of-life. Native Americans have been socially excluded from clinical research and education, which has rendered them an ‘invisible’ population within health care systems and contributed to disparate care provision. Design: A sequential exploratory multi-methods study design was utilized to understand perspectives and needs regarding end-of-life care in the Fort Belknap Indian Community. Methods: The qualitative aim included focus groups and in-depth interviews with Elders, traditional and spiritual guides, health care providers, and other key stakeholders to explore 1) cultural perspectives and attitudes surrounding the trajectory between serious illness and death; and 2) awareness about, and utilization of, existing hospice and palliative care service models. The quantitative aim included a cross-sectional survey with past and current caregivers to describe how various predictors impact barriers to care and supportive care needs. Results: In Aim 1, 26 participants engaged in 2 focus groups (of 5 and 6 participants) and interviews (n=15). Four themes were derived from their stories: 1) family connectedness is always the priority; 2) end-of-life support is a true community-wide effort; 3) everyone must grieve in their own way to heal; and 4) support needs from outside the community. Survey participants (Aim 2) were mostly female (72.4%), between the ages of 30 to 49 years (44.9%), and new to caregiving in the last six months (32.5%). Regression analyses (N=127) demonstrated higher depression, anxiety, stress, and caregiver burden were significant related to increased ... Thesis Nakoda Johns Hopkins University, Baltimore: JScholarship Indian |
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Open Polar |
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Johns Hopkins University, Baltimore: JScholarship |
op_collection_id |
ftjhuniv |
language |
English |
topic |
Palliative care health care access Native American |
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Palliative care health care access Native American Nelson, Katie E EXPLORING END-OF-LIFE CARE: ACCESS AND PERSPECTIVES AMONG THE A’ANININ AND NAKODA NATIONS |
topic_facet |
Palliative care health care access Native American |
description |
Background: Native Americans experience higher mortality due to serious illnesses compared to all other racial and ethnic groups in the United States. There is growing recognition of the need for culturally appropriate and acceptable end-of-life care for reservation-based, Native American communities. However, many continue to experience myriad challenges making access to services difficult; and as such, receive high-intensity interventions near end-of-life. Native Americans have been socially excluded from clinical research and education, which has rendered them an ‘invisible’ population within health care systems and contributed to disparate care provision. Design: A sequential exploratory multi-methods study design was utilized to understand perspectives and needs regarding end-of-life care in the Fort Belknap Indian Community. Methods: The qualitative aim included focus groups and in-depth interviews with Elders, traditional and spiritual guides, health care providers, and other key stakeholders to explore 1) cultural perspectives and attitudes surrounding the trajectory between serious illness and death; and 2) awareness about, and utilization of, existing hospice and palliative care service models. The quantitative aim included a cross-sectional survey with past and current caregivers to describe how various predictors impact barriers to care and supportive care needs. Results: In Aim 1, 26 participants engaged in 2 focus groups (of 5 and 6 participants) and interviews (n=15). Four themes were derived from their stories: 1) family connectedness is always the priority; 2) end-of-life support is a true community-wide effort; 3) everyone must grieve in their own way to heal; and 4) support needs from outside the community. Survey participants (Aim 2) were mostly female (72.4%), between the ages of 30 to 49 years (44.9%), and new to caregiving in the last six months (32.5%). Regression analyses (N=127) demonstrated higher depression, anxiety, stress, and caregiver burden were significant related to increased ... |
author2 |
Thorpe, Roland Wright, Rebecca Davidson, Patricia M Brockie, Teresa Barlow, Allison Ferrell, Betty |
format |
Thesis |
author |
Nelson, Katie E |
author_facet |
Nelson, Katie E |
author_sort |
Nelson, Katie E |
title |
EXPLORING END-OF-LIFE CARE: ACCESS AND PERSPECTIVES AMONG THE A’ANININ AND NAKODA NATIONS |
title_short |
EXPLORING END-OF-LIFE CARE: ACCESS AND PERSPECTIVES AMONG THE A’ANININ AND NAKODA NATIONS |
title_full |
EXPLORING END-OF-LIFE CARE: ACCESS AND PERSPECTIVES AMONG THE A’ANININ AND NAKODA NATIONS |
title_fullStr |
EXPLORING END-OF-LIFE CARE: ACCESS AND PERSPECTIVES AMONG THE A’ANININ AND NAKODA NATIONS |
title_full_unstemmed |
EXPLORING END-OF-LIFE CARE: ACCESS AND PERSPECTIVES AMONG THE A’ANININ AND NAKODA NATIONS |
title_sort |
exploring end-of-life care: access and perspectives among the a’aninin and nakoda nations |
publisher |
Johns Hopkins University |
publishDate |
2023 |
url |
http://jhir.library.jhu.edu/handle/1774.2/68201 |
geographic |
Indian |
geographic_facet |
Indian |
genre |
Nakoda |
genre_facet |
Nakoda |
op_relation |
http://jhir.library.jhu.edu/handle/1774.2/68201 |
_version_ |
1778143797606088704 |