Journal of palliative medicine
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Background: American Indians with chronic kidney disease are twice as likely to develop end-stage renal disease. Palliative care is underused by American Indian patients, although studies show it is not due to an unwillingness to engage in conversations about end of life. Objectives: The aim of our study was to explore the experiences and beliefs of Nephrology and palliative care providers of one tribal community with respect to engaging patients and family members in palliative care. ⋯ Negative stereotypes were present in every theme, although most participants did not acknowledge the role stereotypes played in establishing trust and building therapeutic relationships conducive to end-of-life discussions. Conclusion: Providers serving American Indian patients with kidney disease should consider training in trauma informed care and cultural sensitivity. Negative stereotypes of American Indian patients may impact provider's ability to build trust, a key component of end-of-life conversations, and contribute to misperceptions related to family dynamics, end-of-life preferences, and available community resources.
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Background: How children die in pediatric intensive care units (PICUs) has been poorly described, and support for parents during this traumatic experience could be improved. Better information on perceptible signs of the end of life (EOL) in children may help mitigate the trauma. Objective: To describe the most common perceptible EOL signs in PICU patients. ⋯ Gasping was noted in 12 patients. Conclusion: Perceptible signs of the EOL were different from those reported in children dying in other units or in adults. Sharing information about signs of EOL with parents may prepare them and enable them to better support their child.
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Although pain management is integral to the caregiving role, there is a paucity of evidence synthesizing specific challenges family caregivers (FCs) face when managing pain for their care partners. This review comprehensively identified and summarized such challenges in the setting of advanced illnesses. Electronic databases (PubMed, CINAHL, PsycINFO, Scopus, and Health and Psychosocial Instruments) were searched using index and keyword methods for all articles published before April 2021. ⋯ Many of these challenges have not been fully addressed in prior literature. Thus, this review provides a framework for needed future research to develop interventions that target FCs' specific challenges in providing pain management. The results also highlight a significant lack of research surrounding challenges faced by caregivers of care partners having a noncancer, dementia, or multimorbidity diagnosis.