Facilitators and barriers of implementing end-of-life care volunteering in a hospital in five European countries: the iLIVE study

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Abstract

Background

End-of-life (EoL) care volunteers in hospitals are a novel approach to support patients and their close ones. The iLIVE Volunteer Study supported hospital volunteer coordinators from five European countries to design and implement an EoL care volunteer service on general wards in their hospitals. This study aimed to identify and explore barriers and facilitators to the implementation of EoL care volunteer services in the five hospitals.

Methods

Volunteer coordinators (VCs) from the Netherlands (NL), Norway (NO), Slovenia (SI), Spain (ES) and United Kingdom (UK) participated in a focus group interview and subsequent in-depth one-to-one interviews. A theory-inspired framework based on the five domains of the Consolidated Framework for Implementation Research (CFIR) was used for data collection and analysis. Results from the focus group were depicted in radar charts per hospital.

Results

Barriers across all hospitals were the COVID-19 pandemic delaying the implementation process, and the lack of recognition of the added value of EoL care volunteers by hospital staff. Site-specific barriers were struggles with promoting the service in a highly structured setting with many stakeholders (NL), negative views among nurses on hospital volunteering (NL, NO), a lack of support from healthcare professionals and the management (SI, ES), and uncertainty about their role in implementation among VCs (ES). Site-specific facilitators were training of volunteers (NO, SI, NL), involving volunteers in promoting the service (NO), and education and awareness for healthcare professionals about the role and boundaries of volunteers (UK).

Conclusion

Establishing a comprehensive EoL care volunteer service for patients in non-specialist palliative care wards involves multiple considerations including training, creating awareness and ensuring management support. Implementation requires involvement of stakeholders in a way that enables medical EoL care and volunteering to co-exist. Further research is needed to explore how trust and equal partnerships between volunteers and professional staff can be built and sustained.

Trial registration

NCT04678310. Registered 21/12/2020.

Supplementary Information

The online version contains supplementary material available at 10.1186/s12904-024-01423-5.

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Most cited references 32

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Making sense of implementation theories, models and frameworks

Per Torgeir E Nilsen (2015)

Background Implementation science has progressed towards increased use of theoretical approaches to provide better understanding and explanation of how and why implementation succeeds or fails. The aim of this article is to propose a taxonomy that distinguishes between different categories of theories, models and frameworks in implementation science, to facilitate appropriate selection and application of relevant approaches in implementation research and practice and to foster cross-disciplinary dialogue among implementation researchers. Discussion Theoretical approaches used in implementation science have three overarching aims: describing and/or guiding the process of translating research into practice (process models); understanding and/or explaining what influences implementation outcomes (determinant frameworks, classic theories, implementation theories); and evaluating implementation (evaluation frameworks). Summary This article proposes five categories of theoretical approaches to achieve three overarching aims. These categories are not always recognized as separate types of approaches in the literature. While there is overlap between some of the theories, models and frameworks, awareness of the differences is important to facilitate the selection of relevant approaches. Most determinant frameworks provide limited “how-to” support for carrying out implementation endeavours since the determinants usually are too generic to provide sufficient detail for guiding an implementation process. And while the relevance of addressing barriers and enablers to translating research into practice is mentioned in many process models, these models do not identify or systematically structure specific determinants associated with implementation success. Furthermore, process models recognize a temporal sequence of implementation endeavours, whereas determinant frameworks do not explicitly take a process perspective of implementation.

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Diffusion of innovations in service organizations: systematic review and recommendations.

Trisha Greenhalgh, Glenn Robert, Fraser Macfarlane … (2004)

This article summarizes an extensive literature review addressing the question, How can we spread and sustain innovations in health service delivery and organization? It considers both content (defining and measuring the diffusion of innovation in organizations) and process (reviewing the literature in a systematic and reproducible way). This article discusses (1) a parsimonious and evidence-based model for considering the diffusion of innovations in health service organizations, (2) clear knowledge gaps where further research should be focused, and (3) a robust and transferable methodology for systematically reviewing health service policy and management. Both the model and the method should be tested more widely in a range of contexts.

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How many people will need palliative care in 2040? Past trends, future projections and implications for services

S. N. Etkind, A. E. Bone, B. Gomes … (2017)

Background Current estimates suggest that approximately 75% of people approaching the end-of-life may benefit from palliative care. The growing numbers of older people and increasing prevalence of chronic illness in many countries mean that more people may benefit from palliative care in the future, but this has not been quantified. The present study aims to estimate future population palliative care need in two high-income countries. Methods We used mortality statistics for England and Wales from 2006 to 2014. Building on previous diagnosis-based approaches, we calculated age- and sex-specific proportions of deaths from defined chronic progressive illnesses to estimate the prevalence of palliative care need in the population. We calculated annual change over the 9-year period. Using explicit assumptions about change in disease prevalence over time, and official mortality forecasts, we modelled palliative care need up to 2040. We also undertook separate projections for dementia, cancer and organ failure. Results By 2040, annual deaths in England and Wales are projected to rise by 25.4% (from 501,424 in 2014 to 628,659). If age- and sex-specific proportions with palliative care needs remain the same as in 2014, the number of people requiring palliative care will grow by 25.0% (from 375,398 to 469,305 people/year). However, if the upward trend observed from 2006 to 2014 continues, the increase will be of 42.4% (161,842 more people/year, total 537,240). In addition, disease-specific projections show that dementia (increase from 59,199 to 219,409 deaths/year by 2040) and cancer (increase from 143,638 to 208,636 deaths by 2040) will be the main drivers of increased need. Conclusions If recent mortality trends continue, 160,000 more people in England and Wales will need palliative care by 2040. Healthcare systems must now start to adapt to the age-related growth in deaths from chronic illness, by focusing on integration and boosting of palliative care across health and social care disciplines. Countries with similar demographic and disease changes will likely experience comparable rises in need. Electronic supplementary material The online version of this article (doi:10.1186/s12916-017-0860-2) contains supplementary material, which is available to authorized users.

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Author and article information

Contributors

Berivan Yildiz: b.yildiz@erasmusmc.nl

Journal

Journal ID (nlm-ta): BMC Palliat Care

Journal ID (iso-abbrev): BMC Palliat Care

Title: BMC Palliative Care

Publisher: BioMed Central (London )

ISSN (Electronic): 1472-684X

Publication date (Electronic): 2 April 2024

Publication date PMC-release: 2 April 2024

Publication date Collection: 2024

Volume: 23

Electronic Location Identifier: 88

Affiliations

[1 ]Department of Public Health, Erasmus MC, University Medical Center Rotterdam, ( https://ror.org/018906e22) Rotterdam, The Netherlands

[2 ]Research Department, University Clinic of Respiratory and Allergic Diseases Golnik, ( https://ror.org/01yxj7x74) Golnik, Slovenia

[3 ]Regional Centre of Excellence for Palliative Care, Western Norway, Haukeland University Hospital, ( https://ror.org/03np4e098) Bergen, Norway

[4 ]Department of Clinical Medicine K1, University of Bergen, ( https://ror.org/03zga2b32) Bergen, Norway

[5 ]Palliative Care Unit, Institute of Life Course and Medical Sciences, University of Liverpool, ( https://ror.org/04xs57h96) Liverpool, UK

[6 ]Department of Health Economics, Center for Public Health, Medical University of Vienna, ( https://ror.org/05n3x4p02) Vienna, Austria

[7 ]CUDECA Institute for Training and Research in Palliative Care, CUDECA Hospice Foundation, Malaga, Spain

[8 ]Informal Care and Care Ethics, University of Humanistic Studies, ( https://ror.org/04w5ec154) Utrecht, The Netherlands

Article

Publisher ID: 1423

DOI: 10.1186/s12904-024-01423-5

PMC ID: 10985898

PubMed ID: 38561727

SO-VID: 7be63596-4149-4ac6-bc9b-37b90989ffaf

License:

Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

History

Date received : 11 July 2023

Date accepted : 26 March 2024

Custom metadata

ScienceOpen disciplines: Anesthesiology & Pain management

Keywords: end of life care,volunteering,implementation,hospital volunteer,inpatient

Data availability:

ScienceOpen disciplines: Anesthesiology & Pain management

Keywords: end of life care, volunteering, implementation, hospital volunteer, inpatient

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Most cited references 32

Making sense of implementation theories, models and frameworks

Diffusion of innovations in service organizations: systematic review and recommendations.

How many people will need palliative care in 2040? Past trends, future projections and implications for services

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