Palliative Care Volunteers Research Articles

Determinants of Positive Mental Health in Palliative Care Volunteers: Transferring the SEARCH Positive Education Pathways to Well-being Framework Into a New Field

Determinants of Positive Mental Health in Palliative Care Volunteers: Transferring the SEARCH Positive Education Pathways to Well-being Framework Into a New Field

Adding spontaneity to organizations – what hospice volunteers contribute to everyday life in German inpatient hospice and palliative care units: a qualitative study

BackgroundVolunteers have always been integral to hospice and palliative care. However, their roles have been left relatively undefined and broad.AimThis study aims to examine the role of hospice volunteers in German inpatient hospice and palliative care. The question we seek to answer is: What do hospice volunteers contribute to everyday life in inpatient hospice and palliative care units?MethodsWe undertook a multicenter, on-site qualitative interview study, utilizing problem-centered interviews with 16 volunteers from five inpatient hospice units and one hospital palliative care unit. Interviews were analyzed using grounded theory.ResultsAnalysis of the interviews revealed three typical characteristics of how hospice volunteers’ describe their own role: (1) performing small acts of kindness, (2) creating a family-like atmosphere, (3) expecting emotional experiences. A common theme across all categories is the emphasis on spontaneous actions and personal experiences. The process of dying becomes an experience interpreted by volunteers as enriching, as a gift, as a “teacher”.ConclusionGranting hospice volunteers freedom to act spontaneously and intuitively benefits hospice and palliative care delivery. Organizations should leave sufficient room for spontaneity in order to involve volunteers effectively. Open and unstandardized roles facilitate dynamic work practices.

52 (PB-052) Poster - The role of volunteers in quality palliative care

52 (PB-052) Poster - The role of volunteers in quality palliative care

Are Palliative Care Volunteers Special People? A Comparative Observational Study Exploring Their Sociodemographic Profile and Psychological Resources.

Faced with rising needs for patient support, palliative care is shifting towards a more community-based approach. Yet the profile of volunteers in this field is poorly known. To explore psychosocial characteristics of palliative care volunteers, by comparing them to two groups, volunteers from the health and social sector without contact with palliative patients, and people from the general population without volunteer activity. Observational comparative study. Data were analyzed using descriptive statistics and logistic regression analysis. The 3 groups of participants were recruited in France between September 2020 and June 2021. They completed an online survey assessing sociodemographic characteristics and psychological resources (self-efficacy, hope, optimism, resilience, mindfulness, self-compassion, empathy, forgivingness, and gratitude). Data from 559 participants were analyzed. Palliative care volunteers had overall significantly higher levels of psychological resources than control groups. Multivariate analysis revealed, among sociodemographic and psychological characteristics that showed differences between groups at the univariate level, the most efficient predictors of group status. The best criteria to distinguish palliative care volunteers from health and social sector volunteers were older age, having received training, and lower levels of self-compassion. To distinguish palliative care volunteers from people with no volunteer activity, older age and non-active professional status were the best criteria. Palliative care volunteers displayed more psychological resources than controls. However, older age and being trained for volunteering, emerged as stronger factors for distinguishing palliative care volunteers from controls. Pursuing research about these volunteers should facilitate recruitment, training, and retention.

ITV-Pal programme: protocol of evaluation of the implementation of tech-volunteer programme in palliative care services

IntroductionVolunteer support for patients and families at the end of life provides many benefits for the beneficiaries. New technologies could be a necessary resource in the accompaniment although, if there...

You're Teaching Me Something About Living: Australian Palliative Care Volunteers' Evolving Experiences of Grief and Loss.

Palliative care volunteers play a crucial role in supporting people who are terminally ill. Previous studies have indicated that a personal experience of grief and bereavement is a motivating factor for wanting to be a palliative care volunteer. Using reflexive thematic analysis as a methodological approach, the aim of this qualitative study was to explore the lived experience of grief and bereavement in a group of 11 Australian volunteers in adult palliative care settings. Three themes were identified from the dataset: witnessing and finding community; approaching death and dying with curiosity and openness; living well through death awareness. Importantly, death awareness was felt by volunteers to be an essential part of sense making around their past grief and a source of guidance for appreciating life. The findings of this study contribute to a deeper understanding of volunteering motivations, end-of-life care, and the changing nature of grief as a lived experience.

Deathbed Visions: Hospice Palliative Care Volunteers' Experiences, Perspectives, and Responses.

11 female hospice palliative care volunteers who had either witnessed and/or had patients or patients' family members tell them about deathbed visions (DBVs) were interviewed about their experiences, perspectives, and responses. The volunteers responded to a series of guiding questions and shared stories about their patients' DBVs. During the interviews, the volunteers talked about, among other things, the impact of DBVs on their patients and themselves, how they responded to their patients' DBVs, and their explanations for them. The most common visitors appearing in the deathbed vision stories shared by the volunteers were their patients' deceased family members (parents, siblings). The volunteers described their patients' visions as having largely positive (e.g., comforting) effects on the patients as well as having a positive impact on themselves (e.g., lessening their own fear of death). The volunteers did not initiate conversations about DBVs with their patients, but responded appropriately by listening, asking questions, and not being dismissive if the patient brought it up first. All volunteers provided spiritual as opposed to medical or scientific explanations for DBVs. The implications and limitations of the findings are discussed.

‘The beauty and the less beautiful’: exploring the meanings of dying at ‘home’ among community and practitioner representatives and advocates across Canada

Significant structural and normative pressures privilege the ideal of dying at home in Canada. At the same time, the social complexities and meanings associated with dying in particular locations remain critically unexamined. The aim of this study is to explore how diverse community members, including health and social care stakeholders, talk about preferences for locations of dying, with a particular focus on meanings of dying at home. Semi-structured virtual interviews were conducted with 24 community and practitioner representatives and advocates across Canada during the Covid-19 pandemic. This included compassionate community advocates, palliative care professionals and volunteers, bereaved carers, and members of queer, rural, and immigrant communities. Participants were asked about their own preferences for location of dying and elaborated on these aspects with regard to their client population or community group. Our analysis illuminates how meanings of dying at home are connected to previous experiences and perceptions of institutional care. As such, participants' perspectives are often framed as a rejection of institutional care. Dying at home also often signals potential for preserving ontological security and relational connection in the face of life-threatening illness. However, participants' expertise simultaneously informs a sense that dying at home is often unattainable. At times, this awareness underpins interpretations of both preferences and choices as contingent on considerations of the nature and type of illness, concerns about impacts on families, and available resources. The ideal of dying at home is nuanced by identity, relational, and structural contexts. Knowledge from this study can inform realistic and practical person-centered planning across care settings. It can also help create more representative public policy and health system quality indicators regarding a 'good death' that do not rely on or perpetuate undeveloped and unrealistic assumptions about dying, home, and family care.

Understanding the role and deployment of volunteers within specialist palliative care services and organisations as they have adjusted to the COVID-19 pandemic: A multi-national EAPC volunteer taskforce survey

Background: Early indications were of a major decline in specialist palliative care volunteer numbers during COVID-19. It is important that ongoing deployment and role of volunteers is understood, given the dependence of many palliative care services on volunteers for quality care provision. Aim: To understand the roles and deployment of volunteers in specialist palliative care services as they have adjusted to the impact of COVID-19. Design: Observational multi-national study, using a cross-sectional online survey with closed and free-text option questions. Disseminated via social media, palliative care networks and key collaborators from May to July 2021. Setting/participants: Any specialist palliative care setting in any country, including hospices, day hospices, hospital based or community teams. The person responsible for managing the deployment of volunteers was invited to complete the survey. Results: Valid responses were received from 304 organisations (35 countries, 80.3% Europe). Most cared for adults only (60.9%), provided in-patient care (62.2%) and were non-profit (62.5%). 47.0% had cared for people with COVID-19. 47.7% changed the way they deployed volunteers; the mean number of active volunteers dropped from 203 per organisation to 33, and 70.7% reported a decrease in volunteers in direct patient/family facing roles. There was a shift to younger volunteers. 50.6% said this drop impacted care provision, increasing staff workload and pressure, decreasing patient support, and increasing patient isolation and loneliness. Conclusion: The sustained reduction in volunteer deployment has impacted the provision of specialist palliative care. Urgent consideration must be given to the future of volunteering including virtual modes of delivery, micro-volunteering, and appealing to a younger demographic.

Volunteer Experiences of Pediatric Palliative Care among University Students: A Phenomenological Approach.

This phenomenological analysis was conducted to explore the experiences of college student volunteers in the field of pediatric palliative care. In-depth interviews were conducted with nine study participants who had experience volunteering with children receiving pediatric palliative care. The study analysis was conducted using the Colaizzi method, a rigorous qualitative research method, to develop "intra-group" comparisons among the study participants. Through an analysis of the data, 51 themes, 18 theme clusters, and five main categories were derived. The results confirmed that the experience of university student volunteers in pediatric palliative care can be summarized as "awareness of the role of a volunteer," "difficulties encountered while volunteering," "efforts to overcome the difficulties of volunteer work," "personal reflection," and "awareness of life and death." The results of this study can be used as a practical guide for the effective management of volunteers in the pediatric palliative care setting.

Compassionate community connectors: a distinct form of end-of-life volunteering

Public health approaches to palliative care have long promoted the contribution of formal and informal volunteering to providing effective end-of-life care in neighbourhoods and communities. A central strategy for this is a ‘compassionate communities’ approach that focuses on building care networks and developing community members’ capacities in end-of-life care. There is anecdotal evidence of differences in the motivations and life experiences of traditional palliative care volunteers and volunteers in compassionate community programs. There is however very little research into volunteers seeking a compassionate communities orientated role. This study describes the motivations, experiences and characteristics of volunteers participating in a program called compassionate connectors in Western Australia. Twenty volunteers with a variety of caregiving experiences participated in the pilot study through submitting an expression of interest for recruitment. Analysis indicated that the compassionate community connector role attracted experienced community volunteers who were already familiar with community services and end-of-life supports in their community, demonstrating a pre-existing understanding of the practical and emotional supports families may need for end-of-life care. They articulated some key differences with the hospice/palliative care volunteers and how they wish to engage in fresh ways with their community and move beyond traditional volunteering to exercise more autonomy in providing care. This article argues that clarifying these characteristics will benefit new compassionate community initiatives and provide important information for hospice and palliative care services that may be considering undertaking compassionate community projects. Conceptual clarity about these differing roles will be helpful for all collaborations and partnerships that involve volunteer recruitment and management.

A Qualitative Study on the Position and Role of Volunteers in Integrated Care-An Example of Palliative Care in Croatia.

Volunteers have been present in palliative care since its inception. With the development of palliative care systems, their role and position are changing. Given growing long-term care needs and limited resources in health and social care, volunteers are becoming an important resource in meeting these needs. In Croatia, palliative care has been developing as an integrated care model since 2014. To assess the position and the role of volunteers, we analyzed legislative documents from healthcare and social care and conducted a focus group with volunteers in palliative care. We found that volunteers provide support from the social aspect of care, for the patient and the family. The formal palliative care system involves them as partners in the provision of care, even though this cooperation is informal. The main determinants of their activities are an individualized approach, flexibility, a community presence, and project funding. In conclusion, these determinants allow them to react quickly to identified needs, but with them come some uncertainties of their sustainability. Their activities could indicate what needs to be integrated between health and social care and in what areas. Volunteers both fill in gaps in the system and are ahead of the system, and by doing this they develop new processes around identified unmet needs.

Moral Challenges of Nurses and Volunteers in Dutch Palliative Care. A Qualitative Study.

Objective: To identify moral challenges experienced by nurses and volunteers in palliative care. Methods: A qualitative hermeneutic research design was used. Interviews with nurses (N = 10) and volunteers (N = 4) working in palliative care, in-home care, and hospice setting. Participants were recruited through maximum variation, a purposive sampling technique. Transcriptions were analyzed using qualitative thematic content analysis and open coding. Results: Two themes were identified, each with three subthemes: theme (A) Moral challenges regarding organizational and professional aspects contained the subthemes (1) dealing with protocols and regulations, (2) different professional perspectives on good care, and (3) limits of professionalism. Theme (B) Moral challenges regarding the patient and their family members contained the subthemes (1) dealing with the patient's wishes, (2) the patient's wish to die, and (3) dealing with family members. Conclusion: Nurses and volunteers working in palliative care are confronted with a wide range of moral challenges. Insight into 'real-world ethical challenges' of healthcare providers is important to provide adequate support to nurses and volunteers working in palliative care.

Facilitators and barriers in using comics to support family caregivers of patients receiving palliative care at home: A qualitative study

Background: Family caregiving at home is highly important for people receiving palliative treatment, but also a complex experience, subject to implicit social expectations. This study empirically explored the claim that comics benefit palliative care practice, through evaluating a graphic novel’s value as an aid in supportive conversations with family caregivers. Aim: To identify facilitators and barriers in using Naasten (Loved ones), a Dutch research-based graphic novel about family caregivers providing care at the end-of-life. Design: Qualitative study, following thematic content analysis. Setting/participants: Three focus groups with family caregiver consultants, palliative care volunteers, and healthcare professionals (total N = 23) who supported family caregivers; and individual telephone interviews with family caregivers to whom the book was presented (N = 4). Results: Barriers and facilitators related to: (1) the family caregiver, (2) impact on the family caregiver, (3) impact on the conversation between the person who provides support and the family caregiver, (4) their relationship, and (5) the person who provides support. Naasten was reported as recognizable and supportive, and powerful in raising emotions, awareness and conversation. Barriers concerned the book’s impact due to its style and guidance of a conversation, and doubts about its surplus-value. Conclusions: Emotionally impactful comics may support bereaved family caregivers, but should be introduced with care among current family caregivers, for example, ensuring a right fit, introduction, and follow-up—while taking into account a caregiver’s individual situation, needs, abilities, and affinity with the medium. Comics are preferably used in educational settings, contributing to professional awareness and tailored support of family caregivers.

Deathbed Visions: Visitors and Vistas.

This review article examines the recent (i.e., since the late-1990s) research on deathbed visions (DBVs). The reviewed material includes the features of DBV experiences, terminology and definitional issues in the literature, and prevalence reports of DBVs by family members/caregivers of dying persons, healthcare professionals, terminally ill patients, hospice palliative care volunteers, and nursing home staff. The impact of DBVs on dying persons, why deathbed visitors appear, and possible explanations for DBVs are also considered. The lessons learned from the literature review include the following: DBVs are common experiences that cannot be easily explained, and they typically have positive impacts on dying persons, not the least of which is lessening the fear of death. The literature review also highlights the need for training and education about DBVs.

Palliative care volunteer roles in Nordic countries: qualitative studies—systematic review and thematic synthesis

BackgroundGiven limited palliative care resources, volunteers can be viewed as essential. To better understand the contribution of volunteers, it is useful to look at their roles in care systems with...

The impact on emotional well-being of being a palliative care volunteer: An interpretative phenomenological analysis

Background: Much palliative care provision relies on the support of volunteers. Attention is paid to the risks to professionals providing care, such as stress and burnout, but understanding if this is an issue for volunteers is little understood. It is important to understand the impact their role has on volunteers emotional well-being. Aim: To explore the experiences of palliative care volunteers and how the role impacted on their emotional well-being. Design: Interpretative phenomenological analysis, with data collected through semi-structured interviews. Setting/participants: Volunteers in patient-facing roles within palliative and end-of-life care services in the UK. Results: Volunteers (n = 10) across three palliative and end-of-life care services. Four themes were developed: (1) it can be challenging; (2) it’s where I’m meant to be; (3) managing death; (4) the importance of connection. Challenges included frustrations and questioning themselves. Although difficult at times, volunteers expressed the importance of the role, doing well and that they benefitted too. They also had to manage death and discussed beliefs about life and death, acceptance and managing patients’ fears. Connection with the hospice, patients, staff and other volunteers was important, with a need for everyone to feel valued. Conclusions: Although there are psychosocial benefits for volunteers in their role, it is important to understand the challenges faced and consider ongoing support to help volunteers manage these challenges. This could be addressed through the consideration of coping mechanisms, further training and reflective practice for volunteers.

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.

Experiences of Volunteers and Patient Satisfaction in Home Based Palliative Care, Puducherry, South India-A Descriptive Qualitative Study.

Background: Increasing burden of non-communicable diseases and ageing population has parallely increased the need for Palliative care. Unavailable, inaccessible, and inadequate palliative care services in our setting increased the need for volunteers. In Puducherry, palliative care programme was implemented through trained volunteers in 2015. Objectives: To explore the experiences of volunteers who provide palliative care and also to get feedback on volunteering from the patients who received care. Settings and Design: A descriptive qualitative study was carried out at two Non-Governmental Organizations (NGO) working for palliative care in and around Puducherry. Methods and Material: Participants were selected purposively to include seven volunteers and eight patients to attain information saturation. The time period of this study was between September and October 2018. Analysis Used: Manual thematic analysis was done to identify codes, which were grouped to form categories and themes. Results: Factors that facilitated participants to take up the role of volunteers were witnessing the death of family members with unmet palliative care when required and experiences in organizations working for elderly and disabled children. Improvement in patients' condition and patient satisfaction motivated them to continue, despite lack of resources and social support. Their perception was of having become bolder and empathetic by working as palliative care volunteers. Patients reported satisfaction with the provision of drugs and other materialistic support like clothes and sweets during festivals; however, their basic and financial needs remained unmet. Conclusion: The palliative care programme or the National programme for elderly should focus on components that would improve the quality of palliative care by reducing patients' dissatisfaction. Support in terms of provision of drugs, financial help and nutrition is necessary to improve both the patients' and volunteers' satisfaction in palliative care services.

Hospice Palliative Care Volunteers' Attitudes, Opinions, Experiences, and Perceived Needs for Training Around Medical Assistance in Dying (MAiD).

Medical assistance in dying (MAiD) has been legal in Canada for over 4 years, but little is known about hospice palliative care (HPC) volunteers' attitudes toward MAiD. To address this issue, 48 volunteers from 2 HPC volunteer programs in Atlantic Canada completed an anonymous mail survey examining their attitudes, opinions, experiences, and perceived needs for training around MAiD. The volunteers' responses were generally supportive of MAiD as an end-of-life option and approving of some of the proposed changes to the current MAiD legislation (e.g., 85% of the volunteers either strongly agreed or agreed that advance requests for MAiD should be permitted). In terms of volunteers' experiences, 15% of the volunteers reported that a patient of theirs had tried to initiate a conversation with them about MAiD. Nearly all (96%) of the volunteers indicated that it was not appropriate for them to bring up the topic of MAiD with their patients or patients' family members/caregivers. Seventy percent of the volunteers reported that if a patient of theirs chose to pursue MAiD that they would be comfortable with being present (if asked) when it was being administered. Nearly two-thirds (64%) of the volunteers were interested in learning more about MAiD. The implications of this study for volunteer policies, specifically, those policies relating to the role of volunteers when it comes to conversations about MAiD with patients and patients' family members/caregivers (should they arise) are discussed, as is the need for training on the topic of MAiD.