scholarly journals ILIVE Project Volunteer study. Developing international consensus for a European Core Curriculum for hospital end-of-life-care volunteer services, to train volunteers to support patients in the last weeks of life: A Delphi study

2021 ◽  
pp. 026921632110453
Author(s):  
Tamsin McGlinchey ◽  
Stephen R Mason ◽  
Ruthmarijke Smeding ◽  
Anne Goosensen ◽  
Inmaculada Ruiz-Torreras ◽  
...  
Keyword(s):  
End Of Life ◽  
Scoping Review ◽  
End Of Life Care ◽  
Core Curriculum ◽  
Nominal Group ◽  
Group Meeting ◽  
Life Care ◽  
International Consensus ◽  
Volunteer Training ◽  
Volunteer Study

Background: Volunteers make a huge contribution to the health and wellbeing of the population and can improve satisfaction with care especially in the hospice setting. However, palliative and end-of-life-care volunteer services in the hospital setting are relatively uncommon. The iLIVE Volunteer Study, one of eight work-packages within the iLIVE Project, was tasked with developing a European Core Curriculum for End-of-Life-Care Volunteers in hospital. Aim: Establish an international consensus on the content of a European Core Curriculum for hospital end-of-life-care volunteer services which support patients in the last weeks of life. Design: Delphi Process comprising the following three stages: 1. Scoping review of literature into palliative care volunteers. 2. Two rounds of Delphi Questionnaire. 3. Nominal Group Meeting. Setting/participants: Sixty-six participants completed the Round 1 Delphi questionnaire; 75% (50/66) took part in Round 2. Seventeen participants attended the Nominal Group Meeting representing an international and multi-professional group including, clinicians, researchers and volunteer coordinators from the participating countries. Results: The scoping review identified 88 items for the Delphi questionnaire. Items encompassed organisational issues for implementation and topics for volunteer training. Three items were combined and one item added in Round 2. Following the Nominal Group Meeting 53/87 items reached consensus. Conclusion: Key items for volunteer training were agreed alongside items for implementation to embed the end-of-life-care volunteer service within the hospital. Recommendations for further research included in-depth assessment of the implementation and experiences of end-of-life-care volunteer services. The developed European Core Curriculum can be adapted to fit local cultural and organisational contexts.

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 Measuring indicators of health system performance for palliative and end-of-life care using health administrative data: a scoping review

F1000Research ◽  
2020 ◽  
Vol 9 ◽  
pp. 1438
Author(s):  
Suman Budhwani ◽  
Ashlinder Gill ◽  
Mary Scott ◽  
Walter P. Wodchis ◽  
JinHee Kim ◽  
...  
Keyword(s):  
Performance Measurement ◽  
End Of Life ◽  
Administrative Data ◽  
Scoping Review ◽  
System Performance ◽  
End Of Life Care ◽  
Population Level ◽  
Health System Performance ◽  
Life Care ◽  
Health Administrative Data

Background: A plethora of performance measurement indicators for palliative and end-of-life care currently exist in the literature. This often leads to confusion, inconsistency and redundancy in efforts by health systems to understand what should be measured and how.  The objective of this study was to conduct a scoping review to provide an inventory of performance measurement indicators that can be measured using population-level health administrative data, and to summarize key concepts for measurement proposed in the literature.  Methods: A scoping review using MEDLINE and EMBASE, as well as grey literature was conducted.  Articles were included if they described performance or quality indicators of palliative and end-of-life care at the population-level using routinely-collected administrative data.  Details on the indicator such as name, description, numerator, and denominator were charted. Results: A total of 339 indicators were extracted.  These indicators were classified into nine health care sectors and one cross-sector category.  Extracted indicators emphasized key measurement themes such as health utilization and cost and excessive, unnecessary, and aggressive care particularly close to the end-of-life.  Many indicators were often measured using the same constructs, but with different specifications, such as varying time periods used to ascribe for end-of-life care, and varying patient populations.  Conclusions: Future work is needed to achieve consensus ‘best’ definitions of these indicators as well as a universal performance measurement framework, similar to other ongoing efforts in population health.  Efforts to monitor palliative and end-of-life care can use this inventory of indicators to select appropriate indicators to measure health system performance.

scholarly journals The Selection and Use of Outcome Measures in Palliative and End-of-Life Care Research: The MORECare International Consensus Workshop

2013 ◽  
Vol 46 (6) ◽  
pp. 925-937 ◽  
Author(s):  
Catherine J. Evans ◽  
Hamid Benalia ◽  
Nancy J. Preston ◽  
Gunn Grande ◽  
Marjolein Gysels ◽  
...  
Keyword(s):  
End Of Life ◽  
Outcome Measures ◽  
End Of Life Care ◽  
Life Care ◽  
International Consensus ◽  
Care Research

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.

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