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Academic literature on the topic 'End of life Caregiver experiences in Belize'
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Journal articles on the topic "End of life Caregiver experiences in Belize"
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Quigley, Denise D., and Sara G. McCleskey. "Improving Care Experiences for Patients and Caregivers at End of Life: A Systematic Review." American Journal of Hospice and Palliative Medicine® 38, no. 1 (June 19, 2020): 84–93. http://dx.doi.org/10.1177/1049909120931468.
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Background: End-of-life care is increasing as the US population ages. Approaches to providing high-quality end-of-life care vary across setting, diseases, and populations. Several data collection tools measure patient and/or caregiver care experiences at end of life and can be used for quality improvement. Previous reviews examined palliative care improvements or available measures but none explicitly on improving care experiences. We reviewed literature on improving patient and/or caregiver end-of-life care experiences. Design: We searched U.S. English-language peer-reviewed and grey literature after 2000 on adult end-of-life care experiences. We followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines for quantitative studies, Enhancing Transparency in Reporting the Synthesis of Qualitative Research approach for qualitative studies, and Assessment of Multiple Systematic Reviews tool for the literature reviews. Setting: Palliative and hospice care. Population: Full-text abstraction of 84 articles, identifying 16 articles. Measures: Patient and/or caregiver end-of-life care experiences (captured through administrative data or direct report). Results: Articles examined palliative care experiences across settings; none studied hospice care experiences. Patients and/or caregivers assessed overall care experiences, clinician–staff interactions, provider communication, respect and trust, timeliness of care, spiritual support, caregiver knowledge of care plans, or bereavement support. Efforts aimed at improving end-of-life care experiences are limited and show mixed results. Conclusions: Literature on improving patient and/or caregiver end-of-life care experiences is emerging and focused on palliative care experiences. Evidence on improving hospice care experiences is lacking. Research on strategies for improving end-of-life care experiences should go beyond overall care experiences to include specific aspects of palliative and hospice care experiences.
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Hupcey, Judith E., and Lisa A. Kitko. "ICD Deactivation at the End of Life: Patient and Caregiver Experiences." Journal of Cardiac Failure 19, no. 8 (August 2013): S75—S76. http://dx.doi.org/10.1016/j.cardfail.2013.06.244.
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Boogaard, Jannie A., Jenny T. van der Steen, Alice H. de Boer, and Marjolein I. Broese van Groenou. "How Is End-of-Life Care With and Without Dementia Associated With Informal Caregivers’ Outcomes?" American Journal of Hospice and Palliative Medicine® 36, no. 11 (April 14, 2019): 1008–15. http://dx.doi.org/10.1177/1049909119836932.
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Background: Palliative care for older people with life-limiting diseases often involves informal caregivers, but the palliative care literature seldom focuses on the negative and positive aspects of informal caregiving. Objective: To assess the association of proximity to end of life (EOL) and dementia caregiving with informal caregivers’ burden of care and positive experiences and explain differences in outcomes. Design: Data on 1267 informal caregivers of community-dwelling older people were selected from a nationally representative cross-sectional survey and analyzed using analysis of variance and multivariable regression analyses. Measurements: The Self-Perceived Pressure from Informal Care Scale and the Positive Experiences Scale were administered to assess caregiver burden and positive experiences with providing care. Results: Dementia care, both at EOL and not at EOL, was associated with the most caregiver burden relative to regular care. Dementia care not at EOL was associated with the fewest positive experiences, and EOL care not in dementia with the most positive experiences. Only the differences in burden of care could be explained by variables related to stressors based on Pearlin stress-coping model. Conclusions: Informal caregivers of people with dementia are at risk not only of high caregiver burden but also of missing out on positive experiences associated with caregiving at EOL. Future research should examine how dementia-related factors reduce positive caregiving experiences, in order to make palliative care a positive reality for those providing informal care to community-dwelling persons with dementia.
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Luth, Elizabeth, and Holly Prigerson. "Home Hospice Versus Other Places of Death and Caregiver Stresses." Innovation in Aging 4, Supplement_1 (December 1, 2020): 418. http://dx.doi.org/10.1093/geroni/igaa057.1349.
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Abstract As of 2017, more individuals in the U.S. die at home than in any other location. Hospice care was designed to provide support for people who are dying and their families. However, dying persons may have rapidly emerging needs that home hospice does not immediately meet, thereby, exposing family members to be “first responders.” Thus, home death may result in distress and burden for dying individuals’ family members, even when hospice is involved. This study uses multivariable regression analysis to explore the relationship between place of death and stressful end-of-life experiences in a sample of 185 patients with advanced cancer. We also analyze which end-of-life experiences are associated with death location. Compared to home hospice death, we found dying in a hospital was associated with fewer caregiver exposures to, and reports of fearfulness and helplessness in response to, stressful end-of-life events. Compared to home hospice death, hospital death was associated with decreased frequency of choking, falls, confusion/delirium, and feeling the patient has had enough. It was also associated with less fearfulness about choking and falls and less hopelessness about falls, the patient having enough, and thinking the patient was dead. Our results suggest home death with hospice care, often involves undesirable experiences that result in more caregiver fear and helplessness than dying in a hospital without hospice care. Research is needed to understand how to best support family members through stressful end-of-life experiences even when supported by home hospice services.
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An, Amy W., Susan Ladwig, Ronald M. Epstein, Holly G. Prigerson, and Paul R. Duberstein. "The impact of the caregiver-oncologist relationship on caregiver experiences of end-of-life care and bereavement outcomes." Supportive Care in Cancer 28, no. 9 (January 3, 2020): 4219–25. http://dx.doi.org/10.1007/s00520-019-05185-2.
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Armstrong, Melissa J., Henry L. Paulson, Susan M. Maixner, Julie A. Fields, Angela M. Lunde, Bradley F. Boeve, Carol Manning, James E. Galvin, Angela S. Taylor, and Zhigang Li. "Protocol for an observational cohort study identifying factors predicting accurately end of life in dementia with Lewy bodies and promoting quality end-of-life experiences: the PACE-DLB study." BMJ Open 11, no. 5 (May 2021): e047554. http://dx.doi.org/10.1136/bmjopen-2020-047554.
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IntroductionDementia with Lewy bodies (DLB) is one of the most common degenerative dementias. Despite the fact that most individuals with DLB die from complications of the disease, little is known regarding what factors predict impending end of life or are associated with a quality end of life.Methods and analysisThis is a multisite longitudinal cohort study. Participants are being recruited from five academic centres providing subspecialty DLB care and volunteers through the Lewy Body Dementia Association (not receiving specialty care). Dyads must be US residents, include individuals with a clinical diagnosis of DLB and at least moderate-to-severe dementia and include the primary caregiver, who must pass a brief cognitive screen. The first dyad was enrolled 25 February 2021; recruitment is ongoing. Dyads will attend study visits every 6 months through the end of life or 3 years. Study visits will occur in-person or virtually. Measures include demographics, DLB characteristics, caregiver considerations, quality of life and satisfaction with end-of-life experiences. For dyads where the individual with DLB dies, the caregiver will complete a final study visit 3 months after the death to assess grief, recovery and quality of the end-of-life experience. Terminal trend models will be employed to identify significant predictors of approaching end of life (death in the next 6 months). Similar models will assess caregiver factors (eg, grief, satisfaction with end-of-life experience) after the death of the individual with DLB. A qualitative descriptive analysis approach will evaluate interview transcripts regarding end-of-life experiences.Ethics and disseminationThis study was approved by the University of Florida institutional review board (IRB202001438) and is listed on clinicaltrials.gov (NCT04829656). Data sharing follows National Institutes of Health policies. Study results will be disseminated via traditional scientific strategies (conferences, publications) and through collaborating with the Lewy Body Dementia Association, National Institute on Aging and other partnerships.
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Nakada, Haruka, and Mamoru Arakawa. "Caregiver Perspectives on End-of-Life Experiences of Patients With Left Ventricular Assist Devices." JAMA Internal Medicine 176, no. 8 (August 1, 2016): 1231. http://dx.doi.org/10.1001/jamainternmed.2016.3726.
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Luth, Elizabeth A., and Teja Pristavec. "CAREGIVER BURDEN, BENEFIT, AND PERCEPTIONS OF END-OF-LIFE CARE QUALITY." Innovation in Aging 3, Supplement_1 (November 2019): S668. http://dx.doi.org/10.1093/geroni/igz038.2472.
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Abstract End-of-life care quality (EOLCQ) gauges our success in providing quality care to dying individuals. EOLQC measures rely on reports from bereaved family members who provide care for dying loved ones, but analyses seldom account for how caregivers’ experiences influence their EOLCQ perceptions. Caregivers frequently experience burden, which is linked to poor health outcomes and may negatively bias EOLCQ reports. Individuals may also perceive caregiving benefits that can offset deleterious burden effects, but potentially encourage overly positive EOLCQ perceptions. This paper links National Study of Caregivers (2011) and National Health and Aging Trends Study (2011-2016) data, using regression analysis and a sample of 380 EOL caregivers to examine how caregiving burden and benefits perceptions shape and moderate EOLCQ reports. Caregiving burden is unrelated to EOLCQ in adjusted models. Benefits are associated with marginally greater odds of being informed about the dying person’s condition and reporting their personal care needs were met. Burden and benefits moderate these two measures. Despite benefits, low burden caregivers report they were informed about the dying person’s condition with 90% probability. Regardless of burden, high benefits caregivers report the same with 90% probability. Low burden and benefits caregivers report met care needs with 90% probability. High burden and benefits caregivers have 90% probability of such reports. Given these reports are used in formal hospice care evaluations by CMS, additional research should explore why caregiving burden and benefit are associated with some EOLCQ measures and why individuals reporting high burden and benefits provide more positive EOLCQ appraisals.
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LaValley, Susan A., and Elizabeth A. Gage-Bouchard. "Life Course Stage and Social Support Mobilization for End-of-Life Caregivers." Journal of Applied Gerontology 39, no. 8 (April 12, 2018): 820–27. http://dx.doi.org/10.1177/0733464818766666.
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Caregivers of terminally ill patients are at risk for anxiety, depression, and social isolation. Social support from friends, family members, neighbors, and health care professionals can potentially prevent or mitigate caregiver strain. While previous research documents the importance of social support in helping end-of-life caregivers cope with caregiving demands, little is known about differences in social support experiences among caregivers at different life course stages. Using life course theory, this study analyzes data from in-depth interviews with 50 caregivers of patients enrolled in hospice services to compare barriers to mobilizing social support among caregivers at two life course stages: midlife caregivers caring for parents and older adult caregivers caring for spouses/partners. Older adult caregivers reported different barriers to mobilizing social support compared with midlife caregivers. Findings enhance the understanding of how caregivers’ life course stage affects their barriers to mobilization of social support resources.
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Luth, Elizabeth A., and Teja Pristavec. "Do Caregiver Experiences Shape End-of-Life Care Perceptions? Burden, Benefits, and Care Quality Assessment." Journal of Pain and Symptom Management 59, no. 1 (January 2020): 77–85. http://dx.doi.org/10.1016/j.jpainsymman.2019.08.012.
Full textDissertations / Theses on the topic "End of life Caregiver experiences in Belize"
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Battle, Rachael Florita. "Family Caregivers' Perspectives on Establishing Hospice Care in Belize." ScholarWorks, 2019. https://scholarworks.waldenu.edu/dissertations/6970.
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End-of-life (EOL) care decisions present a challenge for family caregivers. Despite the increasing number of terminally ill patients in need of pain management and comfort care, there is limited qualitative data about how populations in the developing world can access culturally appropriate resources and EOL support. In this phenomenological study, 17 Garifuna family caregivers in southern Belize were interviewed about their experience caring for terminally family members. The conceptual frameworks were Kübler-Ross’s hospice approach and Watson’s theory of human caring. The two theories were selected based on their significance to this process: Kübler Ross’s hospice approach and its impact on the family system during the end stage of life and Watson’s theory of human caring for its emphasis on the impact of the importance of meeting the basic needs of individuals. NVivo 12 was used to code and generate themes for further analysis. Caregivers who said they would not utilize support outside of the home were those who were committed not do so at the request of the patient. Caregivers who cared for their family member and those who could financially afford to hire caregivers in their home to assist with their relative said they would not utilize nonfamily support. All others, regardless of relationship to the patient, indicated they would have accepted care if the environment were safe, caring, and culturally sensitive. Additionally, the caregivers saw their needs as secondary and insignificant compared to the comfort and care of the patient. This study may contribute to positive social change by revealing strategies and services that could be included in the design of a health services delivery system to meet the needs of individuals facing EOL decisions.
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Mori, Hiroko. "Characteristics of caregiver perceptions of end-of-life caregiving experiences in cancer survivorship: in-depth interview study." 京都大学 (Kyoto University), 2012. http://hdl.handle.net/2433/157856.
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Nasrullah, Ghany. "Caregivers’ experiences of unmet needs during palliative care." Thesis, Hälsohögskolan, Högskolan i Jönköping, HHJ, Avd. för omvårdnad, 2018. http://urn.kb.se/resolve?urn=urn:nbn:se:hj:diva-38616.
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Caregivers while, the biggest providers of palliative care for terminally sick patients, are often neglected in the process of providing care, which inadvertently affects their overall health and well-being. This study aims to explore the experiences of the unmet needs of the caregivers in palliative care. The literature review is based on seven quantitative, four qualitative and one mixed methodology approach studies. Results show a shortage of information given to caregivers regarding disease progression, symptomatology, support services and financial services. Furthermore the themes of unmet needs that emerged are physical, psychological, emotional, social and spiritual needs. Caregivers also reported the shortage of standard services provided by healthcare sector. A healthy relationship scenario, where caregivers are supported to look after themselves as well as their loved ones, would boost the support they render to the patients. The provision of needed services to caregivers, nurses, and healthcare personnel is required to fulfill a healthy relationship and further develop it by learning from the caregivers’ experiences. In conclusion, effective communication between caregivers and care providers is found to be a prerequisite for building trust and could contribute to satisfy the informational, medical, social and spiritual needs while helping to decrease health strains of caregivers.
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Carlberg, Viktoria, and Nassir Abdullahi. "Anhörigas upplevelser av palliativ vård vid livets slutskede : en litteraturöversikt." Thesis, Ersta Sköndal Bräcke högskola, Institutionen för vårdvetenskap, 2020. http://urn.kb.se/resolve?urn=urn:nbn:se:esh:diva-8571.
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Bakgrund: Palliativ vård i livets slutskede inträder i övergången då patienten närmar sig livets slut och kännetecknas av en helhetssyn på människan. Vården utförs i syfte att lindra lidande och främja livskvaliteten för alla patienter med progressiv, obotlig sjukdom eller skada. Anhöriga ska också erbjudas att delta i den palliativa vården. Forskning visar att ungefär 10 procent av efterlevande riskerar att få sorgerelaterade psykiska besvär. Syfte: Syftet med studien var undersöka anhörigas upplevelser av palliativ vård vid livets slutskede. Metod: Litteraturöversikt med tio artiklar. Nio kvalitativa artiklar och en artikel med mixed-method som analyserades enligt Fribergs metod. Resultat: Huvudtemana som växte fram var kommunikation, information, anhörigstöd och delaktighet i den palliativa vården. Huvudtemana delades var för sig upp i underkategorierna kommunikation som mottogs väl, kommunikation som brast, information som förmedlades bra, undermålig information, emotionellt stöd, avsaknad av emotionellt stöd, andligt stöd, tillfredställande delaktighet, när anhöriga inte blev delaktiga. Slutsats: Anhöriga upplevde brister beträffande både kommunikation, information, delaktighet och emotionellt stöd i den palliativa vården. Detta medförde ett onödigt lidande och försämrad livskvalitet. Bristerna fick dem i värsta fall att känna sig förringade och avvisade. Anhöriga behövde en kommunikation som genomsyrades av empati och engagemang. Informationen behövde vara lättförståelig och upprepas. Anhöriga upplevde att de hade behov avemotionellt stöd i form av att bli förstådda och bekräftade i sin sorg. De upplevde också ett behov av att få delta i vården och upplevde den palliativa vården som mer positiv om de erbjöds att delta.Background: Palliative care in the final stages of life enters the transition when the patient approaches the end of life and is characterized by a holistic view of man. The care is performed in order to alleviate suffering and promote the quality of life for all patients with progressive, incurable disease or injury. Relatives must also be offered to participate in palliative care. Research shows that about 10 percent of survivors are at risk for grief-related mental illness. Aim: The purpose of the study was to investigate relatives' experiences of palliative care at the end of life. Method: Literature overview with ten articles. Nine qualitative articles and one article with mixed method. Results: Main themes emerged were communication, information, family support and participation in palliative care. Main themes were divided separately into the sub-categories communication well received,communication broken, information conveyed well, substandardinformation, emotional support, lack of emotional support, spiritual support, satisfactory participation, when relatives did not participate. Conclusion: Relatives experienced shortcomings in terms of communication, information, participation and emotional support in palliative care. This led to unnecessary suffering and deteriorating quality of life. In the worst case, the shortcomings made them feel degraded and rejected. Relatives needed a communication that was permeated by empathy and commitment. Information needed to be easy to understand and repeat. Relatives felt they needed emotional support of being understood and confirmed in their grief. They also experienced a need to participate in care and experienced palliative care as more positive if they were offered to participate.