Les mesures de confinement qui prévalent dans plus d'une centaine de pays touchés par la pandémie de COVID-19 ont bouleversé de manière tragique l'accompagnement des personnes en fin de vie et le processus de deuil de leurs proches aidants. Dans cet article, nous recensons les écrits sur le deuil et analysons les conséquences potentielles du contexte de pandémie sur l'expérience des individus endeuillés. Ensuite, nous explorons les modalités de soutien alternatives qui s'offrent aux personnes éprouvées par la perte d'un proche en raison de la pandémie. Puis, en nous appuyant sur la littérature répertoriée et sur le modèle des communautés compatissantes, nous présentons le projet "J'accompagne", dont la mission est de créer une communauté virtuelle de soutien autour des proches aidants et des endeuillés par la COVID-19.
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.
BACKGROUND: Worldwide, pharmacy practice is changing to include new roles and responsibilities. Laws enabling the implementation of assisted dying are expanding in international jurisdictions. Pharmacy practice in assisted dying is subsequently expanding. However, studies of how pharmacists experience their practice when engaged in assisted dying are absent. To progress research into the lived experiences of pharmacists practicing in assisted dying, the development of an inquiry framework to guide such research is the first step.
OBJECTIVE: The objective was to develop a theoretical framework of inquiry for use in subsequent continuing research which may explore the actual experience of pharmacy practice in assisted dying.
METHODS: Perspectives were gathered from expert and senior pharmacists who were anticipating the imminent implementation of assisted dying practice. Analysis focused on understanding what aspects of practice experience were important to them. Interview-conversations centred on the question: If you had the chance to talk to experienced pharmacist practitioners who have been involved in the practice of assisted dying, what aspects regarding their experiences, would you like to know about? A conventional approach to qualitative content analysis was utilized to analyze the data.
RESULTS: Findings summarized questions posed by pharmacists contemplating the implementation of assisted dying practice. These perspectives formed the foundation of a theoretical inquiry framework constituted by 8 inter-related dimensional range-continuums. Each range-continuum, designed to explore the lived experiences of pharmacists in practice, is defined. Examples of how the inquiry dimensions will be used to inform future exploratory research are offered within the framework.
CONCLUSIONS: The theoretical inquiry framework will be used to develop knowledge for pharmacists contemplating participation (or not) in assisted dying practice. It is timely to progress research that reveals the informed experiences of pharmacists that are actually practicing in this area. The framework may be adapted for researching pharmacists' experience in other practice areas and contexts.
The mark of a true profession is the ability to self-regulate. As such, advanced practice registered nurses (APRNs) are challenged by their professional organisations to participate in self-evaluation and peer review. Peer review is a method for evaluating the care provided by the APRN to both ensure quality nursing care and promote professional growth. Despite guidelines to participate in a formal peer-review process, there is little information within the nursing profession on how to accomplish peer review. A comprehensive literature review failed to provide a framework for peer review that is practice focused, fosters a learning environment and encompasses the thought process and clinical decision-making of the palliative care advanced practice nurse. A group of palliative care APRNs set out to create a process that encompassed the breadth of clinical decision-making in palliative care advanced nursing practice. Using the eight domains of palliative care, a narrative case review structure was created. The resulting process both assisted the APRNs in professional growth and provided timely feedback for the annual performance evaluation.
BACKGROUND: Home care of children with life-limiting diseases is extremely challenging for parents/family caregivers and their social environment. In order to gain new insights into the perspective of family caregivers, we employed digital Network Maps for the first time in the field of pediatric palliative care.
AIM: To examine whether the use of Network Maps helps to identify and visualize significant members of the social support system and the quality of the relationship, as well as the main areas of life that are experienced as being supportive by each individual.
DESIGN: The design was an integrated mixed methods study. Creation of Network Maps was assessed in conjunction with qualitative interviews. In addition, participants gave an oral feedback on the Network Maps themselves.
SETTING/PARTICIPANTS: Parents of patients supported by a Specialized Home Pediatric Palliative Care team were eligible for inclusion. Forty-five parents were enrolled in the study.
RESULTS: All mothers and fathers were able to generate their individual Network Map without problems. The composition of the support systems differed greatly, even between members of the same family. Parents named on average 11 supporting actors, mainly family members and health care professionals. Some relationships were perceived as helpful and stressful at the same time.
CONCLUSION: Network Maps appear to be an appropriate tool for the collection, reconstruction, and assessment of the current support situation of parents of dying children. Further studies should examine the usefulness of Network Maps for the understanding of the caregivers' support needs and for the development of psychosocial interventional strategies by pediatric palliative care teams.
Background: The University of Iowa Hospitals and Clinics (UIHC) has a palliative care (PC) volunteering program that has recruited college students since 2010. There is little research on the effects of PC volunteering on collegiate volunteers.
Objective: The objective is to determine the impact of PC volunteering on college students' professional lives and on their interest in PC.
Design/Setting/Measurements: The UIHC Volunteer Services office sent a 25-question survey with closed- and open-ended items to previous and current PC college volunteers. We used descriptive statistics to characterize the sample. Free text responses were analyzed using a descriptive qualitative approach with three independent coders.
Results: Seventy-one percent of respondents (23/33) reported they were more likely to pursue PC after volunteering. PC volunteering helped change views of patient care and abilities to discuss end-of-life situations. Ninety-one percent served as informal ambassadors by discussing PC with family and peers. Major themes identified include motivation to volunteer for patient contact and interest in learning about PC. Respondents described meaningful patient interactions, lessons in empathy, and the power of listening.
Conclusions: These results suggest that PC volunteering affects career choices and helps volunteers gain needed listening skills for patient care in the future. The unique exposure and interactions with PC patients and their families have changed volunteers' understanding of health care. PC volunteers speak in their social networks about PC. This experience may increase the likelihood of student volunteers to pursue careers in PC.
BACKGROUND:: Effective palliative care requires a strong evidence base to advance clinical practice and policy-making. Calls for more collaborative and strategic approaches to research have resulted in the development of research networks at national and wider regional levels.
AIM:: The aim was to synthesize the learning arising from the activities of the Palliative Care Research Network from the island of Ireland, in order to identify the overarching messages from these activities. The ultimate aim is to promote the communication of these messages to practice.
DESIGN:: The study developed a systematic search process influenced by Preferred Reporting Items for Systematic Review and Meta-Analysis guidelines, with analysis of data adopting a qualitative critical interpretative synthesis approach using thematic synthesis.
PARTICIPANTS:: In total, 142 dissemination products were sourced from 22 associated projects, including peer-reviewed publications, conference presentations, reports, and web/social media posts.
RESULTS:: The synthesis of dissemination products identified 4 key themes relating to palliative care research and practice: (1) addressing the needs of patients while recognizing the caregiver role, (2) equal access to connected services, (3) general and specific needs in palliative care research, and (4) challenges in palliative care research.
CONCLUSIONS:: The key themes identified relate to challenges in both practice and research, highlighting the complexity of palliative care provision that aims to support both patients and carers, and research in this area. However, an important implication is the need for a broader approach to dissemination (beyond traditional academic activities) to ensure that research in palliative care is well placed to inform both practice and policy.
BACKGROUND: In recent years, compassion has motivated the development of programs oriented to create communities and societies involved in the relief of suffering. The development of compassionate communities and cities begins in each one of us, though it relies on organizations, providers and societies as a whole who need tools and methodologies as a part of a set of actions to help compassionate communities and cities to become a reality rooted widely in social values. In order to describe the "All with You®" methodology and its components: a method designed to develop compassionate communities and cities at the end of life that can be extended to organizations, communities, municipalities, cities or countries. In addition, this article tries to describe several experiences from applying the method in different cities and contexts.
METHODS: A search of models for the development of compassionate communities was carried out initially to guide the elements and phases that could help to create a systematized method that will help organizations to create compassionate communities. After analysing the results, alliances were established with some of the main promoters at the time in the development of compassionate communities to validate the designed method. The city of Seville (Spain) was selected to validate the phases of the method and analyse the results based on a series of indicators. Finally, the methodology is being spread throughout cities in various countries, and the experiences are being evaluated with common indicators.
RESULTS: The "All with You®" method (Todos Contigo® in Spanish) has been developed as a systematic approach that enables anyone interested in building compassionate communities or cities to include all of the elements outlined in the Compassionate City Charter. All with You® is a method that includes eight phases that allows organizations to be guided in the development of compassionate communities and cities towards a certification process that is evaluated through a series of structures, process and results indicators. The main actions of this method are based on social awareness, training, and the implementation of networks of care using innovative elements like Community Promoters and the RedCuida protocol to provide support, backing and care for those who face advanced chronic disease and end of life situations. Several cities in Spain and Latin America have already joined the movement of compassionate cities using this method, including four in Spain (Seville, Badajoz, Getxo and Pamplona), four in Colombia (Cali, Medellin, Fusagasugá and Bogotá) and one in Argentina (Buenos Aires).
CONCLUSIONS: The All with You® method has made the development of compassionate communities and cities possible, aligning organizations and cities to promote compassionate acts, and to start creating networks involved in a global community united by a vocation for caring.
Accompagner un deuil favorise le « retour à la vie » et permet d’éviter des complications psychiques, tout particulièrement après la mort d’un enfant. Une bonne connaissance du réseau d’accompagnement du deuil permet de proposer à chacun une aide appropriée ; différentes offres en Île-de-France sont présentées, en particulier les groupes d’entraide. L’importance de bien se connaître entre partenaires, d’être en liens fréquents, de s’apprécier et se respecter mutuellement est déterminante pour un fonctionnement effectif et harmonieux du réseau. La manière dont les choses se sont passées avant le décès, au moment du décès et après, autour de l’enfant, entre les familles et les soignants, peuvent faciliter ou compliquer un processus de deuil. L’attention portée aux besoins et aux attentes des parents ainsi qu’une bonne connaissance des offres d’accompagnement du deuil aidera les soignants à informer et à orienter les parents après la mort de leur enfant, également à mieux trouver la juste place auprès d’eux dans ces moments si délicats. Il leur sera alors possible de s’investir dans une « autre histoire » en ayant le sentiment d’avoir « fait du bon travail ».
BACKGROUND AND OBJECTIVES: In 2014, Nova Scotia released a provincial palliative care strategy and implementation working groups were established. The Capacity Building and Practice Change Working Group, comprised of health professionals, public advisors, academics, educators, and a volunteer supervisor, was asked to select palliative care education programs for health professionals and volunteers. The first step in achieving this mandate was to establish competencies for health professionals and volunteers caring for patients with life-limiting illness and their families and those specializing in palliative care.
METHODS: In 2015, a literature search for palliative care competencies and an environmental scan of related education programs were conducted. The Irish Palliative Care Competence Framework serves as the foundation of the Nova Scotia Palliative Care Competency Framework. Additional disciplines and competencies were added and any competencies not specific to palliative care were removed. To highlight interprofessional practice, the framework illustrates shared and discipline-specific competencies. Stakeholders were asked to validate the framework and map the competencies to educational programs. Numerous rounds of review refined the framework.
RESULTS: The framework includes competencies for 22 disciplines, 9 nursing specialties, and 4 physician specialties.
CONCLUSIONS: The framework, released in 2017, and the selection and implementation of education programs were a significant undertaking. The framework will support the implementation of the Nova Scotia Integrated Palliative Care Strategy, enhance the interprofessional nature of palliative care, and guide the further implementation of education programs. Other jurisdictions have expressed considerable interest in the framework.
BACKGROUND: Integrated palliative care aims at improving coordination of palliative care services around patients' anticipated needs. However, international comparisons of how integrated palliative care is implemented across four key domains of integrated care (content of care, patient flow, information logistics and availability of (human) resources and material) are lacking.
AIM: To examine how integrated palliative care takes shape in practice across abovementioned key domains within several integrated palliative care initiatives in Europe.
DESIGN: Qualitative group interview design.
SETTING/PARTICIPANTS: A total of 19 group interviews were conducted (2 in Belgium, 4 in the Netherlands, 4 in the United Kingdom, 4 in Germany and 5 in Hungary) with 142 healthcare professionals from several integrated palliative care initiatives in five European countries. The majority were nurses (n = 66; 46%) and physicians (n = 50; 35%).
RESULTS: The dominant strategy for fostering integrated palliative care is building core teams of palliative care specialists and extended professional networks based on personal relationships, shared norms, values and mutual trust, rather than developing standardised information exchange and referral pathways. Providing integrated palliative care with healthcare professionals in the wider professional community appears difficult, as a shared proactive multidisciplinary palliative care approach is lacking, and healthcare professionals often do not know palliative care professionals or services.
CONCLUSION: Achieving better palliative care integration into regular healthcare and convincing the wider professional community is a difficult task that will take time and effort. Enhancing standardisation of palliative care into education, referral pathways and guidelines and standardised information exchange may be necessary. External authority (policy makers, insurance companies and professional bodies) may be needed to support integrated palliative care practices across settings.
The International Palliative Care Leadership Development Initiative (LDI) is a model demonstration project that aimed to expand the global network of palliative care leaders in low and moderate-resource countries who are well positioned to apply their new leadership skills. Thirty-nine palliative medicine physicians from 25 countries successfully completed the 2-year curriculum that included three thematic residential courses, mentorship and site visits by senior global palliative care leaders, and personal projects to apply their new leadership skills. The focus on self-reflection, leadership behaviors and practices, strategic planning, high-level communication, and teaching skills led to significant personal and professional transformation amongst the participants, mentors and the LDI Team. The resulting residential course curriculum, and the personal leadership stories and biosketches of the Leaders are now available open-access at IPCRC.net. Already, within their first years post-graduation, the Leaders are using their new leadership skills to grow palliative care capacity through significant changes in policy, improved opioid/other medication availability, new and enhanced educational curricula and continuing education activities, and development/ expansion of palliative care programs in their organizations and regions. We are not aware of another palliative care initiative that achieves the global reach and ripple that LDI has produced.
OBJECTIVES: Fear of death and dying is common in patients with advanced cancer, but can be difficult to address in clinical conversations. We aimed to show that the experience of death anxiety may be deconstructed into a network of specific concerns and to provide a map of their interconnections to aid clinical exploration.
METHODS: We studied a sample of 382 patients with advanced cancer recruited from outpatient clinics at the Princess Margaret Cancer Centre, Toronto, Canada. Patients completed the 15-item Death and Dying Distress Scale (DADDS). We used item ratings to estimate a regularised partial correlation network of death and dying-related concerns. We calculated node closeness-centrality, clustering and global network characteristics.
RESULTS: Death-related anxieties were highly frequent, each associated with at least moderate distress in 22%-55% of patients. Distress about 'Running out of time' was a central concern in the network. The network was organised into two areas: one about more practical fears concerning the process of dying and another about more psychosocial or existential concerns including relational problems, uncertainty about the future and missed opportunities. Both areas were yet closely connected by bridges which, for example, linked fear of suffering and a prolonged death to fear of burdening others.
CONCLUSIONS: Patients with advanced cancer may have many interconnected death-related fears that can be patterned in individual ways. The bridging links between more practical and more psychosocial concerns emphasise that the alleviation of death anxiety may require interventions that integrate symptom management, advance care planning and psychological treatment approaches.
Most people indicate their preference to die at home; however, in the developed world, most die in hospital. Dying at home requires complex factors to be in place in health services and informal networks of care to successfully provide support. This study examines the ways health systems, services, and individual health care professionals influence care at home at the end of life. Three principles guide the reorientation of health services and enable their transition from hindrance to help: re-evaluation of organisational values, recognition of the primacy of caring networks, and realignment of the inherent paternalism in health care provision.
Background: Public health and palliative care are both broad disciplines with blurred boundaries. There is growing support for an alignment of palliative care to public health. Given the novel nature of this alignment and the ambiguity of the parent definitions, there is an understandable lack of clarity around this merged model.
Methods: The aim of this study is to describe the theoretical features of the public health approach to palliative care as articulated in the current research literature. An integrative literature review was conducted using systematic methods to identify qualitative and quantitative studies that expressly support such an approach.
Results: The search identified 18 studies. A thematic synthesis of these studies identified three different paradigms of a public health approach to palliative care within the current empirical research. These were defined as a health-promotion approach focussed on empowerment at community level, a World Health Organisation approach which focussed on systems at country level, and a population-based approach which typically viewed palliative care issues from an epidemiological perspective.
Conclusion: This review highlights that the public health approach to palliative care is understood in various ways. It is important that future research studies clarify which public health approach they are referring to.
Dans la maladie d'Huntington, la solidarité, l'accompagnement des malades et des familles, la diffusion d'informations pour optimiser les soins, la sensibilisation du public et le soutien de la recherche scientifique, sont portés par des réseaux et associations dont l'association Huntington France.
Le diagnostic d'état pauci-relationnel doit être posé avec beaucoup de précautions. L'accompagnement souvent prolongé, proposé au mieux dans des structures spécifiques, est dominé par l'incertitude de l'évolution neurologique, du vécu du patient, de ce qu'il souhaite. Le regard porté sur le patient, la convergence et la cohérence des sollicitations familiales influe sur son devenir. Le patient n'est pas en capacité de s'exprimer et le regard de la famille sur lui est un élément qui devient déterminant.