Methodology to co-produce an intervention to support family caregivers caring for loved ones at their end of life (CEOL-CARE)
Nina Canova1, Ghislaine Behaghel2, Sofia Savinelli2, Rafael Fink3, Daniel Widmer4, Dominique Carla Massard5, Suzanne Guerin6, Monica Fliedner7, Mathieu Bernard8, Philip Larkin2, Francesca Bosisio1
1School of Management and Engineering Vaud and University of Applied Sciences and Arts Western, Switzerland, Yverdon-les-Bains, Switzerland; 2Chair Kristian Gerhard Jebsen of Palliative Care Nursing, Palliative and Supportive Care Service, Lausanne University Hospital and University of Lausanne, Lausanne, Switzerland; 3Senior-lab (La Source, HEIG-VD, ECAL (HES-SO)), Lausanne, Switzerland; 4General practitioner, volunteer accredited physician, Unisanté, University Center for General Medicine and Public Health, University of Lausanne, Lausanne, Switzerland; 5Informal caregiver expert, Grandvaux, Switzerland; 6Psychology and Research Design, University College Dublin, Dublin, Ireland; 7University Center for Palliative Care University Hospital Berne, Bern, Switzerland; 8Chair of Palliative Psychology, Palliative and Supportive Care Service, Lausanne University Hospital and University of Lausanne, Lausanne, Switzerland
Background
In Switzerland people’s often wish to die at home. However, caring for a loved one at the end-of-life at home is challenging for family caregivers. Initiatives to support them exist but they often fail to meet their needs. Yet, lack of support hinders family caregivers’ physical and psychological health, as well as their grieving process. Unplanned emergency hospitalizations are also increased consequently. The project aims to co-design a nurse-led intervention for family caregivers accompanying a person at the end of life at home in order to increase their confidence and capacities.
Objectives
To present the methodology we used to co-design this intervention and the indicators we used to assess the effectiveness of this participatory action research (PAR).
Design
PAR is an approach that actively engages stakeholders and caregivers throughout the research process in order to bridge scientific and experiential knowledge.
Methods
The research team include a family caregiver, a general practitioner, 4 nurses, 4 psychologists and a sociologist. The project consists in 4 steps: 1) literature review to identify interventions to support family caregivers, 2) interviews with professionals and family caregivers concerned by end-of-life homecare, and a map of services available on the territory, 3) participants' feedback of results and prioritization of needs, 4) co-production of an intervention.
Results
Steps 1 to 3 allowed us to identify family caregivers’ needs for end-of-life homecare and to highlight that the current services are poorly accessible and coordinated. Thanks to meetings, family caregivers report increased confidence in their abilities, creation of meaningful relationships among and between family and professional caregivers and better service know-how.
Step 4 involves the creation of three working groups mixing family caregivers, associations, and professionals to improve 1) assessment of family caregivers’ needs during end-of-life homecare, 2) response to those needs, and 3) partnership between professionals and family caregivers. An evaluation of how the process is perceived by participants and could allow us to reach the goals of CEOL-CARE is also ongoing.
Conclusion
The main outcome of co-designing an intervention that meets family caregivers’ priorities and considers the local context is about to be met. The community’s engagement and the initial results encourage us to pursue this project, which could serve as a basis for national deployment.
Rethinking palliative care from a sustainable perspective
Camille Meyer, Raffaella D'Orio, Catherine Dorogi, Sarah Leduc, Florence Payet
Fondation Rive-Neuve, Switzerland
This practical project is part of the need to rethink Palliative Care (PC) from a sustainable perspective. Our foundation currently offers specialist palliative care (SPC) in hospital and is recognized as a center of expertise: it receives patients, their families and relatives. Established in the heart of a small town, our foundation is characterized for its close links with the local population, making it easier to understand the specific needs of the context. It is currently engaged in a process aimed at expanding its range of support services. The project, which has a human dimension, promotes a community care approach, emphasizing collaboration with community health organizations and local health institutions to provide care centered on the specific needs of each patient. In this region, there is no access to first line specialized palliative care at home or in nursing home. The introduction of a new model aims to provide 1st line primary care directly at home and in nursing home by offering a 24/7 telephone hotline (for patients and staff) to respond concretely with field interventions in case of palliative emergency needs. The service will provide a full assessment, personalized medical treatment, coordination with existing teams and advanced technical care, all under the supervision of a medical and nursing team. For several years, health professionals and hospital management have been making clinical observations, which is supported by research into scientific and political findings. In order to adapt the project to the context, an analysis of resources was necessary. At the same time an assessment of barriers and facilitators was undertaken. Careful planning, proactive risk management and taking advantage of opportunities can ensure the success of such a pivotal initiative for the community. It remains essential to be agile and resilient in the face of challenges throughout the project. The sustainability of the Swiss healthcare system is being significantly challenged, highlighting the fact that medicine is based on a model of infinite progress, raising expectations that are oQen unrealistic, while the financial and human resources required are limited. This project to improve access to PC is designed to be implemented in the context of the evolution of the healthcare environment and the needs to support societal changes aimed at ensuring its sustainability
Challenging taboos surrounding palliative care through theater: a participatory research-creation
Melanie Vachon1, Andréanne Côté2, Dominique Girard3
1Université du Québec à Montréal, Canada; 2CIUSSS Nord-de-l'île-de-Montréal, Canada; 3Radboud UMC, Pays-Bas
1) Idea: Day after day, many terminally ill patients pass away without having had access to the care they would have needed. This is partly due to a lack of knowledge, apprehensions, misunderstandings, myths, and taboos surrounding palliative care among the general public, patients themselves, their close ones, and some healthcare professionals. Faced with this realization, it appeared necessary to create new ways of raising awareness and educating the general public and healthcare professionals who are not specialized in the palliative care approach. Thus was born the idea of a collaborative documentary theater project, focusing on the transition to palliative care, and serving as a starting point for a citizen conversation on the topic. 2) Achievements: Through the implementation of a rigorous participatory research-creation process, combining qualitative and art-based research methods, our transdisciplinary team co-created a sensitive, truthful, and educative play on palliative care. The fictional work was constructed and validated using the perspectives of patients, their close ones, and palliative care professionals, as well as during public readings. The final play was presented 15 times in the format of a video recording, followed by discussions with the audience. Furthermore, the play has been presented in an academic context to students in medicine, psychology, social work, nursing science, and bioethics. Pre-post descriptive and qualitative data on the understanding of palliative care, among other things, were collected after each presentation of the work. 3) Conclusion/Lessons learned: The collected data show that watching the play could contribute to a better understanding of palliative care among the general public and healthcare professionals who not specialized in the palliative care approach. The results further suggest that theater could be a relevant cultural mediation modality to demystify palliative care and dispel certain associated taboos. Nonetheless, certain challenges remain regarding the broad dissemination of the work, particularly in reaching marginalized populations.
Deployment of a tool for identifying palliative care patients (ID-PALL) in a university hospital neurology and neurosurgery service
Mathieu Bernard, Stéphanie Burgniard, Giulia Mac Dermott, Estelle Berron, Nadia Nouri Lalaoui, Davide Strambo, Krystel Vasserot, Philip Larkin, Claudia Gamondi, Fabienne Teike
Lausanne University Hospital, Switzerland
Background
Identifying patients requiring palliative care is a major public health concern in order to improve equitable access. ID-PALL is a validated instrument accompanied by recommendations for good practice that supports nurses and physicians in this identification.
Objectives
The aim of this project was (i) to deploy the implementation of ID-PALL in a neurology service of a university hospital in Switzerland, (ii) to assess the prevalence of patients in need of palliative care, and (iii) to evaluate the feasibility and acceptability of ID-PALL.
Methods
This implementation study was conducted between November 2022 and October 2023. First, a research nurse of the Palliative care service and a working group of the Neurology and neurosurgery service composed of nurses and physicians developed an implementation procedure for the use of ID-PALL ((i) training of nurses and physicians, (ii) weekly presence of the research nurse at the interprofessional decision-making colloquium, (iii) strategy for using the recommendations for good practice, (iv) creation of a pocket card to facilitate the daily use of ID-PALL, (v) adaptation of the electronic patient record). At the end of the implementation phase nurses and physicians answered a questionnaire and participated in focus groups to assess feasibility and acceptability.
Results
Eight trainings were given and 70% of the professionals were trained. ID-PALL was completed for 633 patients (40.5% of all patients), 36.3% of patients assessed needed general palliative care and 15.9%, specialised palliative care. 87% of participants were satisfied with the use of ID-PALL (satisfaction rating ≥ 8/10), 90% reported that ID-PALL was easy to implement (≥ 8/10) and 87% reported clinical usefulness for their practice (≥ 8/10). Focus groups showed that ID-PALL promotes discussion within the medical and nursing team, validates a subjective clinical impression, and legitmises nursing requests to physicians. However, ID-PALL was rarely used by physicians and recommendations for good clinical practice were under utilised.
Conclusion
Training, day-to-day presence in the clinical field, and participation at the interprofessional colloquium are key determinants for successful implementation. The availability of hospital mobile consultation palliative care teams and the involvement of physicians remain crucial aspects to ensuring the continued use of ID-PALL.
Experiencing bereavement: Preliminary results from an umbrella review
Deborah Ummel1, Maude Turcotte1, Frédérike Ross1, Dargis Luc2
1Université de Sherbrooke, Canada; 2Université du Québec à Montréal, Canada
Background: Experiencing grief is often a difficult ordeal for loved ones, who must rebuild their world and make new sense of life without the other (Neimeyer et al., 2010). The so-called "normal" grief experience is usually made up of emotional, cognitive, behavioral, and physical reactions (e.g., sadness, confusion, sleep disturbances, Worden, 2018) likely to occur following a significant loss.
Objectives: This study aims to systematically and exhaustively identify the factors associated with coping strategies mobilized when experiencing the loss of a loved one.
Design: An overview of reviews (Gates et al., 2022) was conducted to describe the various factors playing a role in individuals' coping with bereavement.
Methods: With a literature search supervised by a specialized librarian in several databases (e.g., PsycInfo, Medline, CINAHL) with appropriate keywords, 1299 potentially interesting studies were identified (after duplicates were removed). The selection of pertinent studies was conducted following two phases. In the first phase, two research assistants independently screened titles and abstracts to include systematic reviews or meta-analyses describing factors associated with bereaved adults' experiences published in English, French, or German. In the second phase, the entire articles were read in full by the same research assistants who applied the same inclusion and exclusion criteria. During the two phases, an inter-rater agreement was calculated, and conflicts regarding studies' inclusion were resolved in the presence of a third person. The whole process was supported by the use of Covidence software and followed the PRISMA guidelines for overviews of reviews.
Results: Article selection is still ongoing at the time of the abstract submission, but this paper will present factors associated with bereaved adults' experiences inspired by two theoretical frameworks: the integrative approach developed by Cummings (2000) and the bioecological approach (Bronfenbrenner, 2005). The strengths of these two approaches will allow us to describe both individual characteristics of bereaved people and the sociocultural and environmental contexts in which their experience takes place in a dynamic and integrated perspective.
Conclusion: Recommendations regarding grief acknowledgment and prevention will be discussed, as well as suggestions for further research.
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