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

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.

Supporting the Bereaved in the COVID-19 Era: A Scoping Review of Interventions.

People whose family member(s) friend(s) have died from COVID-19 or other causes have been deeply affected by the physical and social restrictions imposed during the pandemic. These limitations have affected end-of-life care and support for the bereaved. The purpose of this review is to identify: the published studies of evaluated programs about interventions for people who have experienced bereavement during the COVID-19 pandemic, and to develop recommendations for researchers and policy makers. Using scoping review methodology, a literature review was undertaken for articles published from January 1, 2020 through February 28, 2023 to identify interventions shown to be beneficial to people who have experienced the death of loved ones during the COVID-19 pandemic. The search yielded 1588 articles of which three studies met the criteria of utilizing a pre and post-test design with only one of these, a randomized controlled trial. The interventions included in this review demonstrate preliminary efficacy.

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.

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.

The use of reflective diaries in end of life training programmes: a study exploring the impact of self-reflection on the participants in a volunteer training programme.

BACKGROUND: A training programme was developed and delivered to a cohort of volunteers who were preparing for a unique role to provide companionship to dying patients in the acute hospital setting. This comprehensive programme aimed to provide an opportunity for participants to fully understand the nature and responsibilities of the role, whilst also allowing sufficient time to assess the qualities and competencies of participants for their ongoing volunteering role. Participants completed reflective diaries throughout the training course to record their ongoing thoughts and feelings. The purpose of this paper is to present a phenomenological analysis of these entries to understand participants' experiences, perceptions and motivations. METHOD: The wider study was structured into three phases. Phase 1 was the delivery of a 12 week, bespoke training programme; Phase 2 involved a 26 week pilot implementation of the Care of the Dying Volunteer Service and Phase 3 was the research evaluation of the training and implementation which would inform the further development of the training programme. Self-reflection is a common component of End of Life training programmes and volunteers in this study completed a reflective diary after participation in each of the training sessions. A thematic analysis was undertaken to explore and understand the participants' experience, perceptions and motivations in relation to their participation in the training. RESULTS: All 19 volunteers completed the reflective diaries. From a potential 228 diary entries over the 12 week training programme, 178 diary entries were submitted (78 %). The following key themes were identified: Dying Alone and the importance of being present, Personal loss and the reconstruction of meaning, Self-Awareness and Personal growth, Self-preservation and Coping strategies and group unity/cohesion. CONCLUSIONS: The participants in this study demonstrated that they were able to use the diaries as an appropriate medium for reflection. Their reflections were also instrumental in the ongoing revision and development of the training programme. Analysis of their entries illustrated that the diaries could provide the opportunity for a reappraisal of their world view and personal philosophy around death and dying. Further research is undoubtedly required, however this paper suggests that self-reflection in this way, supports preparation in honing the appropriate attitudes and qualities required to work in this role.

Stand by me: a volunteer's reflection on working on an academic palliative care unit in Germany.

PURPOSE OF REVIEW: To relate personal experience and reflections on the tasks and role of a volunteer in an academic palliative care unit into the context of the English publications of 2009. We took a snapshot of the most recent publications as a way of placing the rather unique experiences of this German volunteer in an international context. RECENT FINDINGS: Five recent studies were found discussing the importance of volunteers in an interdisciplinary context, but mainly focusing on the volunteer's role in the community, interacting with terminally ill patients and their caregivers. Furthermore, aspects of ethical issues, reasons for starting and continuing to volunteer for hospice and the role of male volunteers were evaluated in these studies. SUMMARY: The studies feature on the one hand the positive recognition of volunteers, for example, two studies revealed a significant interest by the respondents of having volunteers if they were dying. Also, these articles focused on family carers, who voted for the service of hospice/palliative care volunteers; on the other hand, efforts have to be made to improve the recruitment of volunteers especially if it comes to male support. A further study, reporting on ethical issues, indicates that little is known about these issues when it comes to a volunteer's interaction with a patient in difficult situations, how these are to be managed. These studies give us valuable clues on how and where to make continuous improvements.

[Doctor and grief]. / Arzt und Trauer.

In Germany approximately 1% of the population dies each year. This indicates that at least 2-3% of the population will be bereaved every year. Consequently, approximately 2 million people will experience severe loss in Germany each year. This has not only strong psychosocial implications, but is also linked to a broad range of health risks, including increased mortality. Given these statistics it is surprising that loss, grief and bereavement are not given more attention within undergraduate, postgraduate and continuing professional medical education across Germany. This article aims to provide doctors with some suggestions for meaningful and practical support for the bereaved within medical practice. After a short introduction on how current bereavement research is influencing thinking relating to bereavement processes, the article focuses on specific medical options. The role of the doctor in bereavement is discussed, highlighting that this role is not one of a bereavement counselor. However, doctors do encounter bereavement in practice and should be able to provide direction, which enables people to move through the grieving process, allowing them--in the words of J.W. Worden--to move the deceased emotionally to a new place and reengage with their own life.

Caregivers in death, dying, and bereavement situations.

This document examines issues related to the work of both formal and informal caregivers as they are involved in caring for dying and/or bereaved individuals. The examination is organized around five central questions: what brings individuals to this work?; what enables them to develop effective caregiving relationships?; what sustains them in their work?; what responsibilities do they have to themselves and to others?; and how are they are influenced by the social context of their work? The goal of this article is to help individuals and teams improve the care they provide in death-related situations, while also assisting educators, managers, and administrators to prepare and support these caregivers in more effective ways.