AIMS: This mixed methods longitudinal study evaluated Nav-CARE for feasibility, acceptability, ease of use, and satisfaction by older persons and volunteers.
METHODS: Nine volunteer navigators visited 23 older persons with serious illness every 3 to 4 weeks for 1 year. Data were collected from volunteer navigators, and older person participants at baseline, during the year- long implementation and post implementation.
RESULTS: Volunteer navigators and older persons reported Nav-CARE was easy to use, feasible and acceptable. The majority of older persons agreed or strongly agreed that they were satisfied with the navigation services (100%; 8/8), that navigation services were important to them (87%; 7/8), that they would recommend the program to someone else (87%; 7/8), and would participate in the program again (75%; 6/8). Similarly, volunteer navigators reported 100% (9/9) satisfaction with the program, 100% (9/9) would recommend it to others, and 67% (6/8) would participate again.
CONCLUSIONS: Nav-CARE appears to be a feasible, acceptable, and satisfactory program for older persons with serious illness and volunteer navigators.
Depuis plusieurs jours, nous en parlions entre nous sur un mode dubitatif : « Tu y crois vraiment ? » Puis, la réalité s’est imposée. Le cadre infirmier du service de soins palliatifs dans lequel je suis bénévole m’a fait savoir très gentiment, presque avec gêne, que, selon les directives administratives reçues, ma présence, notre présence devait être temporairement suspendue. Les visites des familles des malades elles aussi devaient subir le même sort. Il a rajouté qu’en ce qui concernait ces dernières, le service saurait largement faire les exceptions voulues. Ce dernier point m’a rassuré. Comme si, par substitution, je ne désertais pas tout à fait le service.
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J’ai été appelée pendant le confinement, par le personnel de l’Ehpad où j’interviens comme bénévole d’accompagnement dans le cadre de Jalmalv, pour accompagner une personne en fin d’existence. Ce même jour, lorsque je suis allée dans l’unité protégée, c’était comme si l’on entrait dans un monde complètement inconnu, un peu comme si l’on était sur la lune, ou lorsqu’on voit les visages des costumés du carnaval de Venise ou bien des clowns dans le cirque, tous avec une expression figée. Du personnel, je ne reconnaissais personne : mes amies que je connais depuis cinq ans ! Chacun·e occupé·e par sa tâche de soins… tous fidèles au poste !
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Bénévole d’accompagnement depuis 2007, j’interviens au domicile ou à l’Ehpad de Die (26) depuis 2010, après avoir accompagné des patients à l’unité de soins palliatifs. J’ai la chance d’avoir rencontré Mme A. à la demande de l’équipe mobile de soins palliatifs. Nous sommes plusieurs bénévoles auprès d’elle, depuis quelques années. Nous l’avons d’abord connue dans son appartement d’un quartier de Die, et depuis 4 ans, nous la visitons à l’Ehpad rattaché à l’hôpital. Par sa durée, cet accompagnement me rend témoin d’un lent dépouillement, fait de pertes successives soulignant sa solitude.
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Le résultat d'une enquête menée pour les Etats généraux de l'écoute auprès des bénévoles de l'association SOS Amitié. Leur cadre d'action, les qualités requises et les méthodes employées, inspirées pour la plupart des préceptes de Carl Rogers, sont exposés. Le rôle de l'écoute humaine dans la société contemporaine est ainsi démontré.
OBJECTIVE: Volunteers are an important resource in bridging palliative care (PC) services and communities. However, no studies have systematically mapped volunteers' actual contributions to PC provision and how well they are supported by healthcare services at the volunteer level. Such insights are important to shape and optimise supportive environments for volunteering in PC. This study aimed to describe organised volunteering practices in PC across dedicated PC services and healthcare services providing generalist PC, in terms of tasks, training, supervision and how volunteers evaluate these.
METHODS: A cross-sectional postal survey of 2273 volunteers from healthcare organisations providing care for people with serious illnesses in the Flemish healthcare system (Belgium) was conducted between June and November 2018. A two-step cluster randomised sample was used. Volunteers were recruited through their respective volunteering organisations.
RESULTS: Response was obtained for 801 (35.2%) volunteers. Volunteers were predominantly women (75.5%), retired (70.8%) and aged 60-69 years (43.4%). Almost all volunteers provided psychosocial care (96.3%). Volunteers were found to provide either (1) broad volunteer support, emphasising psychosocial and existential care and signposting tasks or (2) narrow volunteer support, emphasising nursing care tasks. Nursing home volunteers had the lowest prevalence of PC training (7.7% vs 53.7% total, p<0.001).
CONCLUSIONS: Multidimensional support was most prevalent among dedicated PC volunteers, while practical support was most prevalent among sitting service volunteers. Results indicate that volunteers can offer complementary support for patients with serious illnesses, although this requires training and consistent supervision. This is currently suboptimal for volunteers in nursing homes and community home care.
Les soins palliatifs demandent de plus en plus de compétences médicales, soignantes, humaines et éthiques, afin d’asseoir leur légitimité dans des domaines de plus en plus pointus de la médecine – réanimation, néonatalogie, cancérologie, gériatrie – ainsi que dans la diversité des prises en charge, y compris au domicile ou en EPHAD.
Dans ce contexte de développement des formations et d’élargissement des champs de compétences de la pratique palliative, cette 5e édition du manuel offre :
-les indispensables connaissances thérapeutiques ;
-les outils, à destination des professionnels en vue d’acquérir une compétence clinique pour la rencontre et l’accompagnement humain, psychique et relationnelle de la personne malade ;
-une contextualisation de la pratique des soins palliatifs dans leur dimension sociale, sanitaire et politique ;
-des jalons pédagogiques pour le développement des soins palliatifs dans leur dimension pédagogique et de recherche.
Background: There is an international drive towards increasing provision of community-led models of social and practical support for people living with advanced illness.
Aim: This feasibility project aims to develop, implement and evaluate a model of community volunteers, identified as Compassionate Communities Connectors, to support people living with advanced life limiting illnesses/palliative care needs. The aims also include the development and evaluation of a training programme for volunteers and assessment of the feasibility, acceptability and preliminary effectiveness of this model of care.
Methods: The approach seeks to map and mobilise people's personal networks of care through the Connectors enlisting Caring Helpers (community volunteers). Up to 10 Connectors will be trained to work with at least 30 families selected by the palliative care service as requiring support. The primary outcome is the effect of the intervention on social connectedness. Secondary outcomes are the intervention's effect on unplanned hospital utilisation, caregiver support needs, advance care plans and satisfaction with intervention for patients/carers, volunteers and service providers.
Conclusion: It is expected that this intervention will enhance patient, carer and family social, psychological and practical support and reduce the need for dying people to be admitted to a hospital.
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.
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.