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.
Le congrès JALMALV d’Antibes en mars 2018 a fait ressortir dans sa réflexion sur l’accompagnement à domicile un faisceau de craintes, une sorte de peur diffuse, qui ferait de cette forme de bénévolat une « conduite à risques » aux plans juridique, sociologique et personnel. Il semblait, pour certains, que passer le seuil du domicile nous fasse entrer dans un monde à part, beaucoup plus instable que celui de l’hôpital. Ni la réflexion de fond sur l’intime ni les quelques expériences que j’ai des visites à domicile ne me conduisent dans cette direction. Ce d’autant moins que, toujours, nous savons faire partie d’un tout : le réseau de soins, l’hospitalisation à domicile qui nous encadre et nous soutient.
Je choisirai de traiter de l’intime comme lieu de la rencontre et non de l’intime-pudeur, la part de soi que l’on cache. Si la première acception est bien entendue, la seconde le sera de facto… Dans l’intime de moi-même, c’est-à-dire au plus profond de moi, en amont des barrières que l’éducation, la société, la culture ont établies, se trouve le lieu privilégié de la rencontre gratuite : l’intime est par excellence le lieu du « nous ». On est intime avec quelqu’un, pas tout seul. Et cet état fait l’économie de la conquête, des visées sur l’autre, des plans sur la comète, du remplissage « mondain ». C’est donc un état qui s’oppose totalement à « l’intrusion ». Être invité à entrer chez l’autre, dans sa maison, est bien un partage de l’intime, le mien, le sien.
Accompagner à domicile, c’est aller à la rencontre d’une personne qui accepte de nous ouvrir sa porte, nous reçoit chez elle en nous faisant entrer dans son intimité. Les bénévoles accueillis sont très attendus. Leur présence et leur écoute offrent à la personne accompagnée un moment de répit, un espace de liberté, comme une fenêtre ouverte sur la vie. La confiance qui s’établit rend possible l’échange, le « laisser-aller », la profondeur de la relation. Elle autorise la personne accompagnée à dire, montrer, partager sa souffrance, sa vulnérabilité, ses peurs, sa résignation parfois, mais aussi ses joies, ses petits et grands bonheurs, autant de moments intenses de vie. Comment parler de ces rencontres, de ce mystère qui rend chacune d’elles tellement unique ?
OBJECTIVE: Quality communication is an important aspect of advance care planning (ACP). This study evaluates a certification program that trains lay people in communication skills to support community-based ACP conversations.
METHODS: The program was developed with an emphasis on communication skills training. The testing of the program included ACP Guides and conversation partners, who were hospice volunteers, to assess the use of communication skills in ACP conversations. The evaluation used direct observations of conversations between trained ACP Guides and conversation partners as well as semi-structured interviews with those trained to become ACP Guides and those participating in the conversation.
RESULTS: Twenty-two ACP Guides participated in the testing phase with a retention rate of 100% completing all 4 sessions. The RELATE model of communication emerged during program development and testing. Evaluation of 15 ACP Guides having ACP conversations found that trained ACP Guides could use the RELATE model of communication to support ACP conversations.
CONCLUSION: A community-academic partnership developed an ACP Community Guides Program that trained individuals to have community-based ACP conversations. Next steps include additional testing of the program and RELATE in small numbers, especially among minority populations, to evaluate acceptability and usability of this approach.
PRACTICE IMPLICATIONS: Laypersons with concrete communication skills can facilitate effective peer-to-peer ACP conversations.
CONTEXT: Volunteer involvement may support organizations to initiate and operationalize complex interventions such as advance care planning (ACP).
OBJECTIVES: A scoping review was conducted to map existing research on volunteer involvement in ACP, and to identify gaps in current knowledge base.
METHODS: We Followed the PRISMA extension for Scoping Reviews (PRISMA-ScR) guidelines. The review included studies of any design reporting original research. ACP was defined as any intervention aimed at supporting people to consider and communicate their current and future health treatment goals in the context of their own preferences and values. Studies were included if they reported data relating to volunteers at any stage in the delivery of ACP.
RESULTS: Of 11 studies identified, 9 different ACP models (initiatives to improve uptake of ACP) were described. The majority of the models involved volunteers facilitating ACP conversations or advance care directive completion (n=6); and three focused on ACP education, training and support. However, a framework for volunteer involvement in ACP was not described; the studies often provided limited detail of the scope of volunteers' roles in ACP and in three of the models, volunteers delivered ACP initiatives in addition to undertaking other tasks, in their primary role as a Volunteer Navigator. Increased frequency of ACP conversation or documentation was most commonly used to evaluate the effectiveness of the studies, with most showing a trend toward improvement.
CONCLUSIONS: Current literature on volunteer involvement in ACP is lacking a systematic approach to implementation. We suggest future research focus on person-centered outcomes related to ACP to evaluate the effectiveness of volunteer involvement.
Quand je me présente dans la chambre d’un patient laryngectomisé que je vois pour la première fois, il m’est souvent difficile de me situer. Ma présence est-elle acceptée ? Ou dois-je me retirer ? En l’absence d’un refus ou d’une invitation à rester clairement exprimée, j’essaie de capter tous les signes qui vont m’aider à prendre une décision (regard, attitude, ouverture/fermeture…).
[Début de l'article]
An elegant woman in her late 60s, Marianne (name changed for privacy) exuded a special grace. That grace, however, was tried and tested as she battled terminal pancreatic cancer, which was spreading throughout her body. When Marianne and I first met, she was a new hospice patient, and I - a biomedical researcher at Stanford University, fresh out of college - was volunteering with her Northern California hospice provider.
[Début du résumé]
Purpose: To explore the perspectives of people anticipated to be in their last year of life, family carers, volunteers and staff on the impacts of receiving a volunteer-provided befriending service. Patient participants received up to 12 weeks of a volunteer-provided befriending intervention. Typically, this involved one visit per week from a trained volunteer. Such services complement usual care and are hoped to enhance quality of life.
Methods: Multiple case study design (n = 8). Cases were end-of-life befriending services in home and community settings including UK-based hospices (n = 6), an acute hospital (n = 1) and a charity providing support to those with substance abuse issues (n = 1). Data collection incorporated qualitative thematic interviews, observation and documentary analysis. Framework analysis facilitated within and across case pattern matching.
Results: Eighty-four people participated across eight sites (cases), including patients (n = 23), carers (n = 3), volunteers (n = 24) and staff (n = 34). Interview data are reported here. Two main forms of input were described—‘being there’ and ‘doing for’. ‘Being there’ encapsulated the importance of companionship and the relational dynamic between volunteer and patient. ‘Doing for’ described the process of meeting social needs such as being able to leave the house with the volunteer. These had impacts on wellbeing with people describing feeling less lonely, isolated, depressed and/or anxious.
Conclusion: Impacts from volunteer befriending or neighbour services may be achieved through volunteers taking a more practical/goal-based orientation to their role and/or taking a more relational and emotional orientation. Training of volunteers must equip them to be aware of these differing elements of the role and sensitive to when they may create most impact.
Trial Registration: ISRCTN12929812
Tant dans l’ordre du ressenti que du vouloir agir, apparaît omniprésente la difficulté pour les témoins de la situation de trouver la juste distance, d’accueillir sans prendre parti, d’écouter dans la neutralité, d’être pris à témoin, en acceptant de ne pas comprendre, de ne pas juger, de respecter les non-dits, de ne pas vouloir réconcilier à tout prix, de ne pas projeter son propre système de valeurs.
Terminally ill patients and family caregivers can benefit greatly from the support and care provided by trained hospice palliative care volunteers. The benefits of doing this kind of volunteer work also extend to the volunteers themselves, who often say they receive more than they give from the patients/families they are “privileged” to be with. The purpose of this article is to demonstrate how hospice palliative care volunteerism benefits both the patients and families who utilize this service as well as the volunteers.
A review of studies demonstrating how terminally ill patients, and especially family caregivers, can benefit from the use of hospice palliative care volunteers and how the volunteers themselves benefit from their experiences.
Terminally ill patients and families receive many benefits from using the services of hospice palliative care volunteers, including emotional support, companionship, and practical assistance (e.g., respite or breaks from caregiving). Volunteering in hospice palliative care also provides many benefits for the volunteers, including being able to make a difference in the lives of others, personal growth, and greater appreciation of what is really important in life.
More needs to be done to promote the value of hospice palliative care volunteers to those who can really benefit from their support and care (i.e., patients and their families) as well as to help people recognize the potential rewards of being a hospice palliative care volunteer. It is a win–win situation.
Forty-one hospice palliative care volunteers (from 6 community- and 3 hospital-based programs) participated in informal group discussions regarding (1) what aspects of their work provide them with the most (and least) satisfaction; (2) why they continue to volunteer; and (3) why they might stop. In 5 of the 9 programs, volunteers said that feeling appreciated by the patients/families they support gave them great satisfaction. Boundary issues and/or role ambiguities were among the least satisfying aspects of their work, mentioned by volunteers in 4 programs. Volunteers in all 9 programs mentioned that they continue to volunteer because it makes a difference/helps others/meets a need in other people's lives. Among the reasons given for potentially stopping volunteering were a family crisis, burnout, old age, and other commitments.
Témoignage de l'auteur, bénévole, dans l'accompagnement d'une femme âgée en maison de retraite. Le contact est facile mais aucun échange ne se construit. Il relate un moment de partage à l'occasion d'une sortie, une balade dans des serres.
Témoignage de l'auteur, bénévole, qui accompagne une femme âgée hospitalisée, seule, et avec qui une communication s'instaure au bout de quelques mois.
L'accompagnement bénévole à domicile est singulier et procure des moments enrichissants et des émotions fortes. Il peut allier le meilleur et le moins bien, peut être le lieu de dangers et de dérives, si l'on n'y prend garde. Accompagner est, certes, un acte individuel mais l'accompagnement ne peut se concevoir que dans un environnement collectif, et a fortiori à domicile où la notion d'équipe est primordiale.
[Résumé éditeur]
Deux bénévoles du Crersi de Montpellier font part d'un accompagnement d'une personne retournée chez elle après son hospitalisation, dont l'état de santé s'est amélioré, et avec laquelle les bénévoles accompagnants ont établi une relation quasi amicale.
[Résumé éditeur]
Témoignage d'une bénévole accompagnante dans un service d'oncologie auprès d'une jeune femme. Ce bénévolat était réduit à une présence muette, sans la moindre contrepartie apparente. Cette patiente communiquait avec peu de personnes.
L'auteure, psychothérapeute, aborde l'ensemble des questions que se pose la personne face à la maladie et à la mort, questions qui la fragilisent et l'amènent à se réorganiser psychiquement.