scholarly journals Death, Dying, and End-of-Life Experiences Among Refugees: A Scoping Review

2018 ◽  
Vol 34 (2) ◽  
pp. 139-144 ◽  
Author(s):  
Farah Madi ◽  
Hussein Ismail ◽  
Fouad M. Fouad ◽  
Hala Kerbage ◽  
Shahaduz Zaman ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Scoping Review ◽  
Life Experiences ◽  
Death And Dying ◽  
Future Research ◽  
Inclusion Criteria ◽  
Life Challenges ◽  
High Commissioner ◽  
Final Settlement

Background: The objective of this scoping review is to identify and map the global literature on death, dying, and end-of-life experiences among refugees. The study aims at identifying gaps in the literature produced on the topic and informs areas for future research in the field. Methods: We included articles that met the following inclusion criteria: (1) Population: Refugees and/or internally or externally displaced individuals due to wars, conflicts, nonnatural disasters, or emergencies; (2) Setting: End-of-life phase, dying, and death that took place following the refuge or displacement and reported after the year 1980; and (3) Study Design: All types of studies including but not limited to primary studies, narrative reviews, systematic reviews, news, editorials, commentaries, opinion pieces, technical reports, and policy briefs. A systematic search of the following electronic databases: Medline, Scopus, CINAHL, and JSTOR yielded 11 153 records. The search of the United Nations High Commissioner for Refugees database Refworld retrieved an additional 7510 records. Results: Seven articles met our inclusion criteria. All articles were coauthored by scholars in universities/research institutes in high-income countries, and except for one, all were conducted in the country of the final settlement of refugees. One article adopted a qualitative approach, another article adopted a mixed-methods approach, one was a narrative review, and 4 articles were reviews of the literature. Three articles discussed access to medical/palliative care among older refugees, and 3 others addressed bereavement and death arrangements. Moreover, one article examined how transmigration and previous experiences from 2 cultural settings in home countries affect the contemplation of death and dying. Implications: Research on end-of-life experiences among refugees is sorely lacking. This study raises awareness of the need for empirical data on end-of-life challenges and palliative care among refugees, thus equipping humanitarian agencies with a more explicit and culturally sensitive lens targeting those with life-limiting conditions.

Are patient portals being used to support palliative and end-of-life care?: A scoping review (Preprint)

2021 ◽  
Author(s):  
M. Pilar Ingle ◽  
Cristina Valdovinos ◽  
Kelsey L. Ford ◽  
Shou Zhou ◽  
Sheana Bull ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Scoping Review ◽  
Future Research ◽  
Patient Portal ◽  
Patient Portals ◽  
User Acceptability ◽  
National Coalition ◽  
Meta Analyses ◽  
Hospice And Palliative Care

BACKGROUND Although patient portals are widely used for health promotion, little is known about use of palliative care and end-of-life (PCEOL) portal tools available for patients and caregivers. OBJECTIVE To identify and assess user perspectives of PCEOL portal tools available to patients and caregivers described and evaluated in the literature. METHODS A scoping review of the academic literature directed by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Review (PRISMA-ScR). We searched three databases. Sources were included if they reported the development or testing of a feature, resource, tool, or intervention, focused on at least one PCEOL domain defined by the National Coalition for Hospice and Palliative Care, targeted adults with serious illness and/or caregivers, and were offered via patient portal tethered to an electronic medical record. Authors independently screened titles and abstracts (N=796) for eligibility. Full texts (N=84) sources were reviewed. Descriptions of the portal tool name, content, targeted population, and reported user acceptability for each tool were abstracted from included sources (N=19). RESULTS Nineteen articles describing 12 tools were included, addressing the following PCEOL domains: ethical/legal (N=5), physical (N=5), and psychological/psychiatric (N=2). No tools for bereavement or hospice were identified. Studies reported high acceptability of tools among users; however, few sources commented on usability among older adults. CONCLUSIONS PCEOL patient portal tools are understudied. As medical care increasingly moves towards virtual platforms, future research should investigate the usability and acceptability of PCEOL patient portals resources and evaluate their impact on health outcomes.

Indigenous people's experiences at the end of life

2015 ◽  
Vol 13 (6) ◽  
pp. 1721-1733 ◽  
Author(s):  
Wendy Duggleby ◽  
Samantha Kuchera ◽  
Rod MacLeod ◽  
Paul Holyoke ◽  
Tracy Scott ◽  
...  
Keyword(s):  
Qualitative Research ◽  
End Of Life ◽  
Indigenous Peoples ◽  
Life Experiences ◽  
The United States ◽  
Indigenous Populations ◽  
Future Research ◽  
Significant Finding ◽  
Inclusion Criteria ◽  
Comprehensive Search

ABSTRACTObjective:The primary purpose of this metasynthesis study was to explore the end-of-life experiences of Indigenous peoples by synthesizing the findings of qualitative research.Method:Sandelowski and Barroso's methodology for synthesizing qualitative research was used and included (a) a comprehensive search, (b) appraising reports of qualitative studies, (c) classification of studies, and (d) synthesis of the findings. Research team members guided this process. This team was multidisciplinary and included Indigenous and non-Indigenous researchers from Canada, Australia, New Zealand, and the United States. Following a comprehensive search, 2255 studies were reviewed and assessed against five inclusion criteria: (a) studies on the experiences of Indigenous populations (all genders, 18 + years of age) at the end of life, (b) studies published in English from any country, (c) studies using qualitative and mixed-methods designs, and (d) studies published between 1993 and 2013.Results:Some 18 studies met the inclusion criteria, and their findings were synthesized. “Preparing the spirit” for transition to the next life was the overarching theme. “Preparing the spirit” occurred within the context of “where we come from.” Processes involved in “preparing the spirit” were healing, connecting, and protecting; through these processes, “what I want at the end of life” was realized. Although not the focus of the metasynthesis, a significant finding was that the studies reviewed identified very clear barriers within healthcare systems and current healthcare provider practices to “preparing the spirit.”Significance of results:The findings provide a beginning understanding of the end-of-life experiences of Indigenous peoples and a foundation for future research. More interpretive qualitative research is critical if palliative care services, the healthcare system, and healthcare providers are to reduce current barriers to “preparing the spirit” for the journey at the end of life.

Increasing our understanding of nonphysical suffering within palliative care: A scoping review

2021 ◽  
pp. 1-16 ◽  
Author(s):  
Maxxine Rattner
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Scoping Review ◽  
Healthcare Providers ◽  
Palliative Sedation ◽  
Primary Sources ◽  
Future Research ◽  
Social Emotional ◽  
Relief Of Suffering ◽  
Hastened Death

Abstract Objective Nonphysical suffering is emotional, psychological, existential, spiritual, and/or social in nature. While palliative care is a discipline dedicated to the prevention and relief of suffering — both physical and nonphysical — little is known about existing research specific to nonphysical suffering within the context of palliative care. This scoping review helps to fill this gap. Method Three hundred and twenty-eight unique records were identified through a systematic search of three databases (MEDLINE, CINAHL, and PsycINFO). The following keywords were used: (suffering) AND (palliative OR “end of life” OR “end-of-life” OR hospice OR dying OR terminal* ill*). Thirty studies published between 1998 and 2019 met the inclusion criteria. Results Losses, worries, and fears comprise patients’ primary sources of nonphysical suffering. Patients face numerous barriers in expressing their nonphysical suffering to healthcare providers. The idea that patients can choose how they perceive their circumstances, thereby minimizing their nonphysical suffering, is pervasive in the research. The nature of nonphysical suffering experienced by family caregivers and palliative care clinicians is revealed in the review. The unique and sensitive interplay between nonphysical suffering and both palliative sedation and requests for hastened death is also evident. Overall, seven themes can be identified: (i) patients’ experiences of nonphysical suffering; (ii) patient coping mechanisms; (iii) efforts to measure nonphysical suffering; (iv) palliative sedation; (v) requests for hastened death; (vi) family suffering; and (vii) clinician suffering. Significance of results This is the first scoping review to map palliative care's research specific to suffering that is social, emotional, spiritual, psychological, and/or existential in nature. Its findings expand our understanding of the nature of nonphysical suffering experienced by patients, families, and palliative care clinicians. The review's findings have significant implications for front-line practice and future research.

Nurse Burnout in Hospice and Palliative Care: A Scoping Review

2021 ◽  
pp. 105413732110398
Author(s):  
Erica Frechman ◽  
Patricia M. Wright
Keyword(s):  
Professional Development ◽  
Palliative Care ◽  
Scoping Review ◽  
Future Research ◽  
Self Awareness ◽  
Personal Factors ◽  
Workplace Issues ◽  
Mitigating Factors ◽  
Hospice And Palliative Care ◽  
Nursing Professional

Burnout in hospice and palliative care nurses is a growing issue, especially in light of the COVID-19 pandemic. However, few studies have focused specifically on burnout in this population. A scoping review was undertaken to identify what is known about burnout among hospice and palliative care nurses, and to unify disparate findings. Analysis of eight articles revealed three overarching categories: personal factors, organizational/workplace factors, and nursing professional development factors. Each category was then divided into three cross-cutting subcategories: contributory and noncontributory factors, mitigating factors, and workplace issues. Recommendations for individuals include self-care as well as self-awareness of intrinsic characteristics that can predispose one to burnout. Within the workplace, leaders are challenged to support evidence-based practice and ongoing education. Role modeling positive communication skills, effective conflict mitigation, responsiveness, promotion of equity, and workplace commitment also help to create a culture of wellness. Nursing professional development may aid in resilience-building, and promotion of self-efficacy, self-confidence, and assertiveness. Although all identified recommendations were derived from the literature, no interventional studies have been conducted to test the effects of suggested interventions. Future research should include interventional studies as well as qualitative research to capture nuanced experiences of burnout in hospice and palliative care nurses.

On the Margins of Death: A Scoping Review on Palliative Care and Schizophrenia

2018 ◽  
Vol 34 (1) ◽  
pp. 62-69 ◽  
Author(s):  
Erin Relyea ◽  
Brooke MacDonald ◽  
Christina Cattaruzza ◽  
Denise Marshall
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
Access To Care ◽  
End Of Life ◽  
Health Care Providers ◽  
Scoping Review ◽  
End Of Life Care ◽  
Psychosocial Interventions ◽  
Life Care ◽  
Care Providers

Schizophrenia is a serious chronic mental illness that results in marginalization and stigma for sufferers. It is the seventh leading cause for disability worldwide. The symptoms of the illness, including hallucinations, delusions, and extremely disordered thinking and behavior, may also introduce barriers to accessing treatment, education, housing, and employment. Little is known about end-of-life care for individuals with schizophrenia. To address this gap, a scoping review was conducted to enhance understanding of hospice and palliative care for patients with schizophrenia. From this scoping review, 342 unique titles and abstracts were identified through a search of 20 databases, including 11 social science databases, 6 medical databases, and 3 gray literature databases. A total of 32 articles met the inclusion criteria and the following 4 themes were identified: Stigma affecting quality of care and access to care; Issues related to consent and capacity for the patient’s end-of-life care decisions and to appoint substitute decision makers; Best practices for psychosocial interventions, pharmacology, family and health-care collaborations, goals of care, setting, and smoking; and Barriers to care, including setting, communication, provider education, and access to care. The review suggests the importance of mandatory interdisciplinary training practices and policy standards outlining cooperative communication across health-care providers. It highlights gaps in evidence-based research on psychosocial interventions and collaborative frameworks to enable the provision of quality end-of-life care for individuals with schizophrenia.

scholarly journals Complexity In The Context of Palliative Care: A Scoping Review

2021 ◽  
Author(s):  
Hironori Ohinata ◽  
Maho Aoyama ◽  
Mitsunori Miyashita
Keyword(s):  
Palliative Care ◽  
Scoping Review ◽  
Healthcare Providers ◽  
The United States ◽  
Patient Specific ◽  
Future Research ◽  
Care Needs ◽  
Living Situation ◽  
Research Activities ◽  
Specific Factors

Abstract Background: Understanding the factors of complexity of patients in palliative care is very important for healthcare providers in addressing the care needs of their patients. However, the healthcare providers’ perception of the factors of complexity in palliative care lacks a common understanding. This study aimed to determine the scope of research activities and specific factors of complexity in the context of palliative care.Methods: A scoping literature review was performed, following the methods described by the Joanna Briggs Institute. We conducted an electronic literature search in MEDLINE (Ovid), PsycINFO, Web of Science Core Collection, and CINAHL, examining literature from May 1972 to 2020.Results: We identified 32 peer-reviewed articles published in English before 2020. The target literature mainly originated in Europe and the United States. The research methods included quantitative studies (n=13), qualitative studies (n=12), case studies (n=3), and reviews (n=4). We reviewed 32 studies and summarized the factors of complexity into three levels: the patient’s level, the healthcare setting level, and the socio-cultural landscape level. We identified factors affecting patient-specific complexity, including sex, race, age, living situation, family burden, resources, treatment, decision-making, communication, prognosis, disease, and comorbidity/complexity. Other factors identified as contributing to patient complexity were the interaction of physical, psychological, social, and spiritual categories, as well as the healthcare providers’ confidence and skills, and the socio-cultural components.Conclusions: This scoping review shows specific factors of complexity and future challenges in the context of palliative care. Future research should include the factors of complexity identified in this review and conduct longitudinal studies on the interactions among them. In addition, it is necessary to examine specific complexity factors in patients from various social and ethnic backgrounds.

In-hand manipulation assessment instruments for children: A scoping review

2021 ◽  
pp. 030802262110378
Author(s):  
Annelize Kruger ◽  
Monique Strauss ◽  
Marieta Visser
Keyword(s):  
Psychometric Properties ◽  
Instrument Development ◽  
Scoping Review ◽  
Development Process ◽  
Critical Evaluation ◽  
Assessment Instrument ◽  
Fine Motor ◽  
Future Research ◽  
Assessment Instruments ◽  
Inclusion Criteria

Aim Accurate assessment of in-hand manipulation is imperative when treating children with fine motor delays. A clinically suitable instrument for in-hand manipulation is required to inform the paediatric developmental and rehabilitation context. Critical evaluation of the available instrument is required to make an informed decision and direct future research. The aim of the study was to assess the available literature with a view to writing a scoping review on in-hand manipulation assessment instruments for children. Methods The Arskey and O'Malley six-stage scoping review was applied. Fifteen databases were sourced for articles published between 1 January 1990 and 31 December 2020. After identifying 33 eligible articles that met the inclusion criteria, the data obtained from the articles were charted. Results Eleven in-hand manipulation assessment instruments were identified and summarised according to (i) the constructs of in-hand manipulation included; (ii) clinical utility aspects of applicability and practicality and (iii) psychometric properties. Conclusion At the time of the review, none of the instruments had comprehensively completed the instrument development process to the point of standardisation with evaluated psychometric properties. Further research is recommended for the development of a gold standard in-hand manipulation assessment instrument.

scholarly journals Talent Research in Sport 1990–2018: A Scoping Review

2020 ◽  
Vol 11 ◽  
Author(s):  
Joseph Baker ◽  
Stuart Wilson ◽  
Kathryn Johnston ◽  
Nima Dehghansai ◽  
Aaron Koenigsberg ◽  
...  
Keyword(s):  
South America ◽  
Scoping Review ◽  
Female Athletes ◽  
Current Knowledge ◽  
Central Element ◽  
Future Research ◽  
Cognitive Variables ◽  
Inclusion Criteria ◽  
Cross Sectional ◽  
Research Designs

Several recent systematic and targeted reviews have highlighted limitations in our understanding of talent in sport. However, a comprehensive profile of where the scientific research has focused would help identify gaps in current knowledge. Our goal in this scoping review was (a) to better understand what others have done in the field of research (e.g., what groups have been examined using what research designs and in what areas), (b) to summarize the constituent areas of research in a meaningful way, (c) to help identify gaps in the research, and (d) to encourage future research to address these gaps. Peer-reviewed articles written in English that met several inclusion criteria were analyzed. A total of 1,899 articles were identified, and the descriptive findings revealed a relatively narrow focus of research on talent in sport. Specifically, the majority of examined articles focused on (a) males only, (b) the sport of soccer, (c) perceptual cognitive variables, (d) developing athletes, (e) adult samples, and (f) cross-sectional designs. For better or worse, the concept of talent remains a central element of how coaches, practitioners, and scientists think about athlete development. Findings from this scoping review highlight the continued need to explore issues related to talent identification, selection, and development in more diverse samples (e.g., female athletes and younger ages) and contexts (e.g., from Africa, Asia, and South America). There is also a clear necessity to focus on under-researched areas using alternative methodologies.

scholarly journals Racial and Ethnic Disparities in Palliative Care: A Systematic Scoping Review

2018 ◽  
Vol 99 (4) ◽  
pp. 301-316 ◽  
Author(s):  
Daniel S. Gardner ◽  
Meredith Doherty ◽  
Gleneara Bates ◽  
Aliza Koplow ◽  
Sarah Johnson
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Scoping Review ◽  
End Of Life Care ◽  
Ethnic Disparities ◽  
Racial And Ethnic Disparities ◽  
Life Care ◽  
Search Terms ◽  
Communities Of Color ◽  
Social Environmental

Despite the advances and spread of palliative care programs, communities of color remain significantly underserved. Although these disparities are widely known, there is a marked lack of empirical evidence. The authors conducted a systematic scoping review that synthesized the literature since 2000 about racial and ethnic disparities in palliative and end-of-life care. We searched PubMed, Medline, SocIndex, CINAHL, Social Work Abstracts, and PsycINFO, using search terms including palliative care or end-of-life care, disparities or barriers or utilization, and race or ethnicity or African American or Hispanic. Findings lend support to extant literature that social-environmental barriers and disparities distinctly affect access to care for these populations. The review expands upon understanding of how social determinants drive disparities in palliative and end-of-life care and suggests implications for practice, policy, and research in promoting health equity in serious illness.

scholarly journals Is There Evidence That Palliative Care Teams Alter End-of-Life Experiences of Patients and Their Caregivers?

2003 ◽  
Vol 25 (2) ◽  
pp. 150-168 ◽  
Author(s):  
Irene J Higginson ◽  
Ilora G Finlay ◽  
Danielle M Goodwin ◽  
Kerry Hood ◽  
Adrian G.K Edwards ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Life Experiences ◽  
Palliative Care Teams
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