The need for training to help healthcare professionals and hospice palliative care volunteers deal with unusual experiences at or around the end of a person's life is an oft-repeated theme in the scientific literature. A pilot study was conducted to examine the effectiveness of a training module designed to improve volunteers' ability to recognize, understand, and respond to unusual end-of-life phenomena (EOLP) in their work with dying patients and their families. Twenty-four volunteers from two community-based hospice palliative care programs completed the 25-item Coping with Unusual End-of-Life Experiences Scale (CUEES) prior to and immediately after attending a lecture and PowerPoint training module. A series of paired samples t tests revealed significant pre- and post-training differences on 14 items, suggesting that volunteers felt more knowledgeable about EOLP, better prepared to deal with EOLP, and more comfortable talking about EOLP with others following the training. The need for additional data is discussed.
Que peut dire un accompagnant sur le temps ? A qui appartient ce temps de l'accompagnement ?
Accompagnant en soins palliatifs et en Ehpad, je dirai d'emblée que le temps de nos rencontres, dans chacun de ces services, est assez différent. Je ne sais pas s'il y a urgence du temps car accompagner est d'abord un travail sur le rythme ; sur le rythme de la personne que l'on accompagne, sur notre rythme aussi que l'on abandonne pour se caler sur le rythme de l'autre. Quelquefois il faut faire un effort pour ne pas être tenté de brûler les étapes et imaginer "gagner un temps précieux à mes yeux" oubliant respecter le temps de l'autre. L'après-midi où j'accompagne, je suis un peu hors du temps, hors de mon temps, car mon temps a un rythme différent.
Hospice volunteers are a high-risk group for anxiety and depression owing to their frequent exposure to patients at the end of life and their subsequent deaths. Resilience is known to be a powerful factor that affects the occurrence of anxiety and depression; however, research on this subject is scarce. We investigated the relationship of resilience with anxiety or depression in hospice volunteers. A total of 145 volunteers were included in the analysis. Participants completed self-reported scales, including the Korean version of the Connor-Davidson Resilience Scale, the State-Trait Anxiety Inventory, Patient Health Questionnaire-9, and the Professional Quality of Life Scale version 5. Pearson correlation coefficients were analyzed to identify the relationship of compassion satisfaction and compassion fatigue with anxiety or depression. A PROCESS macro mediation analysis was used to investigate the mediation effects of compassion satisfaction and compassion fatigue on the relationship between resilience and anxiety or depression. There were significant associations of compassion satisfaction and compassion fatigue with anxiety and depression. The relationship between resilience and anxiety/depression was mediated by compassion fatigue, which had indirect effects on anxiety and depression. Efforts to reduce compassion fatigue and increase resilience could help prevent anxiety and depression in hospice volunteers.
BACKGROUND: There is a reliance on voluntary organisations in healthcare. Education is necessary to keep up-to-date with best practice. The authors' aim was to identify education priorities of voluntary organisations that support parents who experience pregnancy/perinatal loss, to inform the development of an education day.
METHOD: A modified Delphi study was undertaken to identify education needs. There were two Delphi rounds, inclusive of free text, where voluntary group experts reflected on responses in order to develop a consensus among the group.
RESULTS: There were 12 responses to Round One and seven responses to Round Two. From a list of 10 subjects, Round One identified 64 sub-topics, which were then determined as essential, desirable or not relevant in Round Two. The final 55 sub-topics were included in the education day.
CONCLUSION: This study identified educational needs of voluntary organisations. A standardised approach was necessary to develop an education day that is responsive to their learning needs.
Background: Voluntary work plays a significant role in hospice care, but international research has mainly been conducted on the mental health and fear of death of paid hospice staff. The aim of the present study was to compare the Hungarian hospice volunteers with paid employees with regard to attitudes and fear of death, as well as mental health in order to see their role in hospice work and their psychological well-being more clearly.
Methods: The target population of the cross-sectional questionnaire study was hospice care providers in Hungary (N = 1255). The response rate was 15.5% (N = 195); 91.8% (N = 179) of them were women. The mean age of female hospice workers was 45.8 years (SD = 10.46 years, range: 23–73 years). One-quarter (27.9%, N = 50) of the female respondents were volunteers. The instruments were: the Multidimensional Fear of Death Scale, the Perceived Stress Scale, the WHO-5 Well-Being Index, and a shortened versions of the Beck Depression Inventory and the Maastricht Vital Exhaustion Questionnaire.
Results: Volunteers scored significantly lower on 5 dimensions of fear of death than paid employees, and showed significantly lower levels of vital exhaustion and significantly higher levels of psychological well-being than paid employees. Fear of the dying process was associated with an increased perceived stress, depressive symptoms, and vital exhaustion in both groups. Psychological well-being showed a significant negative, moderate correlation with four aspects of fear of death among paid staff; this pattern did not appear in the volunteer group. In addition, the association between fear of premature death and perceived stress, vital exhaustion, and depressive symptoms was more pronounced is case of paid workers.
Conclusion: Higher levels of psychological well-being and lower levels of fear of death among hospice volunteers suggest that they are less exhausted than paid employees. Increasing the recruitment of volunteers in hospices may help reduce the overload and exhaustion of paid employees.
Background: Volunteers play a significant role in supporting hospice and palliative care in Africa, but little is known about the types of volunteers, their motivations and roles in service delivery.
Methods: Palliative care experts from 30 African countries were invited to participate in an online survey, conducted in English and French, that consisted of 58 questions on: socio-demographics, the activities, motivation and coordination of volunteers, and an appraisal of recent developments in volunteering. The questionnaire was pre-tested in Uganda. Quantitative data was analysed descriptively with SPSS v22; answers on open-ended questions were analysed using content analysis.
Results: Twenty-five respondents from 21 countries replied to the questionnaire. The typical volunteer was reported to be a female aged between 30 and 50 years. Volunteer roles included, among others: direct patient assistance, providing psychosocial / spiritual support, and assisting patients’ families. Respondents considered altruism, civic engagement and personal gain (for a professional career) as volunteers’ most significant motivational drivers. One in two respondents noted that recruiting volunteers is easy, and cooperation with the communities was often mentioned as helpful. Trainings mostly occurred before the first assignment, with topics covering the palliative care concept, care, psychosocial support and team work. Half of respondents described recent overall volunteering developments as positive, while the other half described problems primarily with financing and motivation. Most volunteers received transportation allowances or bicycles; some received monetary compensation.
Conclusions: The findings show a wide range of volunteering in palliative care. We identified volunteers as typically 30–50 years old, non-professional females, motivated by altruism, a sense of civic engagement and personal gain. Palliative care services benefit from volunteers who take on high workloads and are close to the patients. The main challenges for volunteer programmes are funding and the long-term motivation of volunteers.
Aim: Volunteers play a key role in hospice and palliative service. This study was performed to investigate the motivations of Korean hospice volunteers and to identify the predictors that affect their service period.
Materials and Methods: The accomplished questionnaire sheets of 93 subjects were included in the analysis. Inventory of Motivations for Hospice Palliative Care Volunteerism to measure the motivations of the hospice volunteers was used. The collected data were subjected to a statistical analysis of the mean and standard deviation, a t-test, and multinomial logistic regression analysis.
Results: The motivation score of the hospice volunteers in South Korea is 75.57 ± 10.97, and the top three in the motivation list were altruism, civic responsibility, and self-promotion. Among the subdomains, altruism, 1-4-year working experience (B = 0.79, standard error (SE) = 0.26, P = 0.002, Exp (B) =0.45), and more than 10-year working experience (B = 1.00, SE = 0.30, P = 0.001, Exp (B) =0.36) had statistically significant influences.
Conclusions: The finding of this study can be used as basic information for the recruitment and management of hospice volunteers in South Korea.
This paper addresses the stories of volunteers in hospice and palliative care (HPC) from eight European countries. The aims of the paper are to explore the experiences of volunteers in HPC from their insider perspective, to understand why volunteers choose to work in this field and to understand what it means to them to be involved in palliative care in this way. Stories were collected by the European Association for Palliative Care (EAPC) Task Force for Volunteering contacts in each of the eight countries. The majority of stories (n = 32) came from volunteers involved in different settings including adult patient's homes, hospices, hospitals and care homes. Twenty volunteers were female, six were male, and ten did not give their gender. Stories were translated into English, and a qualitative framework analysis was performed. Volunteers were asked two questions: 'What do you do as a volunteer?' 'What does volunteering mean to you?' Three themes were identified from the data: (i) What volunteers do (ii) How volunteers approach their work and (iii) What working in HPC means to volunteers. The analysis revealed that common approaches to addressing and describing HPC volunteering in terms of tasks and roles could be expanded. To volunteers, it is not about tasks, but about a part of their life, the impact upon which can be significant. The results of this paper, therefore, add to the understanding of volunteers, in the sense of giving attention, being with, and of compassion as a community resource to patients and families in difficult situations. Theories about presence and presencing might have value in further underpinning this contribution to palliative care. Understanding the extent and depth of the volunteers' experience will help to prevent the undervaluing of their contribution and increase the impact of their involvement.
BACKGROUND: Volunteers make a major contribution to palliative care but little is known specifically about hospital palliative care volunteers.
AIM: The aim of this study was to understand the role and experience of hospital palliative care volunteers.
DESIGN: Systematic review and narrative synthesis.
DATA SOURCES: CINAHL, Embase, Medline, PsycINFO, PubMed and three dissertation databases were searched from inception to June 2019. A forward and backward search of included papers in key journals was also undertaken. Records were independently assessed against inclusion criteria by authors. Included papers were assessed for quality, but none were excluded.
RESULTS: In total, 14 papers were included. Hospital palliative care volunteers were mostly female, aged above 40 years, and training varied considerably. Volunteers faced unique challenges in supporting dying patients due to the nature of hospital care, rapid patient turnover and the once-off nature of support. Volunteer roles were diverse, with some providing hands-on care, but most focused on 'being with' the dying patient. Volunteers were appreciated for providing psychosocial support, seen as complementary to, rather than replacing the work of health professionals. Given volunteers were often required to work across multiple wards, establishing positive work relationships with health professionals was challenging. Divergent views about whether the volunteer was part of or external to the team impacted volunteers' experience and perceptions of the value of their contribution.
CONCLUSION: Hospital palliative care volunteers face unique challenges in supporting terminally ill patients. Volunteer support in hospital settings is possible and appropriate, if sufficient support is available to mitigate the challenges associated with complex, high-acuity care.
Le numéro 139 de JALMALV est dédié à la créativité des personnes en fin de vie, aux médiations artistiques telles que l'art-thérapie, la musicothérapie qui offrent un moment de lâcher-prise et de revalorisation narcissique. Les textes rassemblés interrogent les conditions de cette créativité et les moyens à mettre en place pour le patient y compris dans le rapport aux soins.
Community participation is a frequently mentioned theme in palliative care projects. Yet most of the projects claiming to be community-led have only minimal participation from the community, usually in the form of resource mobilization. Achieving higher levels of participation, the process of involving community collectives as partners in running, and later taking responsibility to sustain and own the program, is more complex and more difficult to achieve. Common barriers include lack of the mandatory preparatory work to understand the social and political dynamics of the community, facilitators’ values and agenda assuming the dominant role in the project, unwillingness on the part of facilitators to give up control and problems with the ‘political process’ that should go with capacity building. Another issue is that community mobilization, being a dynamic cascading process, does not yield to conventional methods of evaluation.
BACKGROUND: There is little information about how healthcare professionals feel about providing palliative care for patients with a substance use disorder (SUD). Therefore, this study aims to explore: 1) the problems and needs experienced by healthcare professionals, volunteers and experts-by-experience (HCP/VE) during their work with patients with SUD in a palliative care trajectory and; 2) to make suggestions for improvements using the quality of care model by Donabedian (Structure, Process, Outcome).
METHODS: A qualitative study was conducted, consisting of six focus group interviews which consisted of HCP/VE working with patients with SUD in a palliative care phase. At the end of the focus group interviews, participants structured and summarized their experiences within a Strengths, Weaknesses, Opportunities and Threats (SWOT) framework. Interview transcripts (other than the SWOT) were analysed by the researchers following procedures from the Grounded Theory Approach ('Grounded Theory Lite'). SWOT-findings were not subjected to in-depth analysis.
RESULTS: HCP/VE stated that within the Structure of care, care networks are fragmented and HCP/VE often lack knowledge about patients' multiplicity of problems and the time to unravel these. Communication with this patient group appears limited. The actual care-giving Process requires HCP/VE a lot of creativity and time spent seeking for cooperation with other caregivers and appropriate care settings. The latter is often hindered by stigma. Since no formalized knowledge is available, care-delivery is often exclusively experience-based. Pain-medication is often ineffective due to active substance use. Finally, several Outcomes were brought forward: Firstly, a palliative care phase is often identified only at a late stage. Secondly, education and a (mobile) team of expertise are desired. Thirdly, care for the caregivers themselves is often de-prioritized.
CONCLUSIONS: Better integration and collaboration between the different professionals with extensive experience in addiction, palliative and general curative care is imperative to assure good palliative care for patients with SUD. Currently, the resources for this care appear to be insufficient. Development of an educational program and social mapping may be the first steps in improving palliative care for patients with severe SUD.
La présence de bénévoles accompagnants auprès des malades en fin de vie vient répondre à un besoin fondamental manifesté par beaucoup de malades, mais aussi des proches confrontés à une transformation rapide de leur contexte relationnel à la suite d'une maladie terminale véue par un être cher. Une transformation identique profonde survient en fin de vie et celle-ci s'appuie souvent sur le témoignage concret proposé par la présence de bénévoles bien formés : l'humanité appelle l'humanité. Les bénévoles constituent aussi un apport précieux pour les équipes soignantes oeuvrant tant en institution qu'à domicile. Cette composante bénévole, qui fait partie des soins palliatifs, n'est pas toujours comprise dans ses dimensions profondes et, pourtant, elle aide puissamment la résilience des malades et des proches, tout comme leur processus de deuil. Il convient donc d'implanter dans tous les lieux concernés les conditions requises pour permettre une saine implication de bénévoles bien formés dans les équipes de soins pallliatifs. Il y a là un défi de culture et de société particulièrement pertinent actuellement.
Background: The Pontifical Academy for Life (PAV) is an academic institution of the Holy See (Vatican) which aims to develop and promote Catholic teachings on questions of biomedical ethics. Palliative care (PC) experts from around the world professing different faiths were invited by the PAV to develop strategic recommendations for the global development of PC ("PAL-LIFE group").
Design: Thirteen experts in PC advocacy participated in an online Delphi process. In four iterative rounds, participants were asked to identify the most significant stakeholder groups and then propose for each, strategic recommendations to advance PC. Each round incorporated the feedback from previous rounds until consensus was achieved on the most important recommendations. In the last step, the ad hoc group was asked to rank the stakeholders' groups by order of importance on a 13 points-scale and to propose suggestions for implementation. A cluster analysis provided a classification of the stakeholders in different levels of importance for PC development.
Results: Thirteen stakeholder groups and 43 recommendations resulted from the first round and, of those, 13 recommendations were chosen as the most important (one for each stakeholder group). Five groups had higher scores. The recommendation chosen for these top five groups were 1) Policy Makers: Ensure universal access to PC; 2) Academia: Offer mandatory PC courses to undergraduates; 3) Health care workers: PC professionals should receive adequate certification; 4) Hospitals and health care centers: Every healthcare center should ensure access to PC medicines, and 5) PC associations: National Associations should be effective advocates and work with their governments in the process of implementing international policy framework. Not chosen recommendations for both this higher scored group, plus for the remaining eight groups, are also presented in order of importance.
Conclusion: The white paper represents a position statementof the PAV with regards to advocacy and promotion of PC.
Accumulating evidence suggests that a dementia diagnosis, for many, triggers feelings of grief, and often marks the first of many losses that will be experienced by both the person who has received the diagnosis and their loved ones, as the disease progresses. Previous research has also revealed that carers who report higher levels of pre-death grief are at greater risk of complicated grief after their loved one has died. Despite this evidence, appropriate bereavement support for people bereaved by dementia is a significant unmet need.
The Bereaved by Dementia project was delivered collaboratively by Cruse Cymru and Alzheimer’s Cymru to address the bereavement needs of people bereaved by dementia throughout Wales. This paper draws on an independent evaluation of the Bereaved by Dementia Project conducted by Aston University and the University of Bristol. We summarise our main findings, recommendations, and suggestions for future research.
Cet atlas présente les ressources pays par pays en matière de soins palliatifs : services pour adultes ou enfants, lits dédiés, composition et nombre d'équipes, tendance et objectifs des politiques nationales de santé des pays.
BACKGROUND: The objective of community-based palliative care is to improve the quality of life of patients and their families and to share the responsibility of caregiving. However, the evidence of the efficacy of volunteer services in community-based palliative care is insufficient.
PURPOSE: This pilot study sought to uncover the feasibility and efficacy of a volunteer program in palliative care.
METHODS: The study used a sequential mixed-methods design. A total of 19 volunteers participated in the training program, and 6 trained volunteers provided services for a period of 10 weeks to 5 families. Quantitative data were collected on death anxiety, coping with death, and meaning in life for volunteers before and after the training and after completing their services. Qualitative data were collected about volunteering experiences.
RESULTS: Significant increases in coping with death and meaning in life after training and in meaning in life after providing services were observed among volunteers. Three categories ("Volunteer's growing influence at home," "Discovering meaning-in-life through volunteering," and "Death as the final journey in life") emerged from the qualitative findings. The caregivers' satisfaction score was high.
CONCLUSIONS: A palliative care program was found to be useful for volunteers in finding meaning in life, motivating continued volunteering. Moreover, caregivers were satisfied with the palliative care service of volunteers.
BACKGROUND: Patients with palliative care needs, require support with their physical needs, but also with their emotional, spiritual and social needs. Patient-Centred Care (PCC) may help organizations to support these patients according to their needs and so improve the quality of care. PCC has been shown to consist of eight dimensions, including for instance access to care and continuity of care, but these eight dimensions may not be equally important in all care settings and to all patients. Furthermore, the views of those involved in care provision may affect the choices they make concerning care and support to patients. Therefore, insight into how professionals and volunteers involved in palliative care delivery view PCC is important for understanding and improving the quality of care in the palliative sector.
METHODS: This study was conducted in the palliative care setting (hospices and hospitals) in the Netherlands. Views on palliative care were investigated using the Q-methodology. Participants were asked to rank 35 statements that represented the eight dimensions of PCC in palliative care settings, and to explain their ranking during a follow-up interview. Ranking data were analysed using by-person factor analysis. Interview materials were used to help interpret the resulting factors.
RESULTS: The analysis revealed two distinct viewpoints on PCC in palliative care: 'The patient in the driver seat', particularly emphasizing the importance of patient autonomy during the last phase of life, and 'The patient in the passenger seat', focussed on the value of coordination between professionals, volunteers and patients.
CONCLUSIONS: The most distinguishing aspect between views on PCC in palliative care concerned control; a preference for the patient in the driver's seat versus shared decision-making by a team consisting of patient, professionals and volunteers. Different types of care and support may be most adequate to satisfy the different needs and preferences of patients with either of these views.
BACKGROUND: Increasing the quality of life with short interventions for vulnerable patients is one of the objectives of palliative care. Biographical approaches are used in a range of different interventions which may require considerable resources of staff time and energy. This study evaluated the feasibility of training hospice volunteers in biographical interviews of patients confronted with a life-limiting disease. For the purpose of this study, we evaluated resources such as time needed for training, coordination and supervision, outcome such as completion of the intervention in appropriate time and risks such as causing distress in patients or volunteers as major determinants of feasibility.
METHODS: Nine volunteers from a hospice service attended an advanced training with an introduction to palliative care, biography work, interview techniques, transcribing and writing. Volunteers interviewed a patient and developed a written narrative from the interview. Volunteers completed a questionnaire before training and were interviewed at the end of the project. The interviews were audiotaped, transcribed, and evaluated using descriptive and qualitative content analysis.
RESULTS: Patients provided positive feedback from the intervention. Volunteers felt that their involvement was personally rewarding and were moved by the courage and confidence of the patients. There were no systematic problems or negative experiences reported neither by volunteers nor by patients.
CONCLUSIONS: We found the use of volunteers for biography work with patients in palliative care feasible and effective in this study. Volunteers needed supervision and ongoing support in providing this intervention.