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D-A-CH session 1: Die Care-Transformation in den DACH-Ländern … auf dem Weg zum gemeinsamen Verständnis.
Language: German
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| Presentations | ||
Ein Buddy als zusätzliche Ressource in der Versorgung schwer und unheilbar erkrankter Menschen: Ergebnisse qualitativer Interviews mit Betroffenen und Versorgenden University Hospital Cologne, Germany Hintergrund: Die ungedeckten Bedürfnisse von Menschen, die zu Hause gepflegt werden und sterben möchten, und ihrer Angehörigen sind sehr hoch und der Unterstützungsbedarf sehr komplex. Obwohl Strukturen und Dienstleistungen zur Unterstützung der Patient:innen und ihrer Familien existieren, erreichen diese Angebote die Betroffenen nicht zeitnah bzw. zu dem Zeitpunkt, an dem sie am dringendsten benötigt werden. Methoden: Individuelle semi-strukturierte Interviews mit Nahestehenden von Verstorbenen, pflegenden Nahestehenden, Versorgern sowie aktuell schwer und unheilbar erkrankten Personen. Die qualitative Inhaltsanalyse der verbatim transkribierten Interviews erfolgte mithilfe von MAXQDA©. Die Ergebnisse entstanden im Rahmen der BMFSFJ-geförderten Studie „Sterben zu Hause“. Ergebnisse: Einzelinterviews mit Hinterbliebenen (n=30), Patient:innen und pflegenden Nahestehenden (n=15) und Versorgern (n=22) wurden in Deutschland geführt (insgesamt n = 67). Die Teilnehmenden gaben an, dass eine Kontaktperson fehlt, die in Echtzeit Informationen über Unterstützungsdienste bereitstellt, die Einleitung einer angemessenen häuslichen Versorgung am Lebensende übernimmt, emotional auffängt, und leicht zugänglich erreichbar ist - ein sogenannter "Buddy". Es wurden zudem Unterschiede zwischen den Gruppen hinsichtlich des Unterstützungsbedarfs festgestellt (z.B. Krebs- /Nicht-Krebs-Patient:innen). Auch das Erkennen und Kommunizieren eigener Bedürfnisse wurde als Grund für die Nicht-Nutzung von Angeboten identifiziert. Diskussion: Die Ergebnisse zeigen das breite Spektrum an Elementen, mit denen ungestillte emotionale, informative, bewertende und instrumentelle Bedürfnisse in der häuslichen Versorgung am Lebensende erfüllt werden können. Zusätzliche Unterstützung ist erforderlich, um die bestehenden Gesundheits- und Sozialfürsorgestrukturen zu konsolidieren, wenn sie noch nicht bekannt sind oder noch nicht ausreichen, um die Versorgung entsprechend den Bedürfnissen der Familien zu gestalten. Hier kann das Konzept eines "Buddys" für schwerstkranke Menschen hilfreich sein, das dabei hilft, die verschiedenen Angebote zu sortieren, in Anspruch zu nehmen und eigene Bedürfnisse zu erkennen. Wichtig ist, dass der „Buddy“ niedrigschwellig erreichbar ist und als Ansprechperson sein Wissen möglichst in Echtzeit weitergibt. Praktische Umsetzung: Seit 1.5.2023 wird die soziale Maßnahme „Ein Buddy für Schwerstkranke und Zugehörige“ durch die Dt. Fernsehlotterie gefördert. Improving Death Literacy in a Community: A systematic Approch 1University Hospital Köln, Germany; 2Last Aid Germany and International; 3Center Integrated Oncology Aachen Bonn Cologne Düsseldorf; 4Caring Community Köln; 5Palliative and Hospice Network Köln; 6Center for Health Service Research Köln Background Dealing with severe illness, dying and bereavement is a major life issue for all of us, but often competencies can be improved, both in health and social structures as well as in patients, relatives and healthy people. Objectives To improve death literacy in a community by setting up a Plan-Do-Study-Act cycle. Design Based on longstanding hospice and palliative care experience, as well as studies on how the last year of life was perceived by bereaved relatives and what they felt was needed as additional support we have started (some completed, some ongoing) several interventions at different levels. Methods Multi-methods research by surveys, secondary data analysis, focus groups, in-depth-interviews. Results Networking projects: Setting up a caring community structure based on a palliative and hospice network together with political and civic support in the city. Health and social care system projects: Implementation of the Surprise Question 12 months in addition to Patient Prompt Sheets, improvement of care of the dying in general wards and intensive care units, offering a communication training on the desire to die for professionals, volunteers and relatives, early integration of palliative care and coordination in multiple sclerosis, glioblastoma and bone marrow transplant patients. Outreach projects: Setting up a “buddy” system for seriously ill people and relatives, last aid and bereavement support in the workplace, school projects on death, dying, bereavement and suicide. Conclusion Improving death literacy in a community can be approached at multiple levels combining innovative practice and scientific evaluation. As this is an ongoing process over decades, appropriate structures need to be put into place to make it independent of specific projects and individuals. Enhancing end-of-life care through community engagement and research – a study protocol University Hospital Erlangen, Friedrich-Alexander-University Erlangen-Nürnberg, Germany Background: Efforts in our region strive to fill gaps in end-of-life care competencies in the population, aiming to establish a compassionate community. This initiative, driven by citizens, regional hospice, palliative care networks, and academic partners, involves publicizing end-of-life care concepts in political arenas and public talks. Objectives: The project's goal is to empower individuals and communities in end-of-life care, enhancing their ability to support and shape experiences around dying, death, and bereavement. It also seeks to evaluate the effectiveness of a co-creative research approach, addressing challenges in merging academic and community objectives. Design: Adopting a participatory approach aligned with Action Research, the project will reflect the needs of the regional population and service providers. The research team includes academic investigators and patients, caregivers, and local service providers - who do not possess specialist research training - acting as co-researchers. Methods: Key methods include validating the German Death Literacy Index, assessing community readiness to address end-of-life issues, and evaluating the effectiveness of participatory research. The co-research team will define problems, identify strategies, and implement and evaluate educational, informational, and peer-support measures, guided by an external expert in participatory process management. Results: The project will provide insights into community end-of-life competence and readiness and will validate a tool for assessing death literacy. It will establish a compassionate community model, facilitating access to end-of-life training and information and attracting attention for end-of-life themes, and developing new empowerment initiatives. Conclusion: There may be challenges in collaborating on activities with varying academic and community goals and target groups, including the public, diverse patient groups, service providers, and policymakers. We will recognise them in aligning academic and community goals and will address them through team education, open dialogue on potential conflicts, collaborative goal-setting, and expert advisory support. Funding: The project has been proposed for funding and is currently unfunded. No conflicts of interest are declared. Young people discovering death, dying and grief – How dialogue culture could pave the way for voluntary work in hospice care 1Malteser Hilfsdienst e.V., Fachstelle Hospizarbeit, Palliativversorung & Trauerbegleitung, Germany; 2Center for Interdisciplinary Research on Aging and Care (CIRAC), University of Graz, Austria; 3Institute for Pastoral Theology and Pastoral Psychology, University of Graz, Austria; 4Kardinal König House Vienna; Vienna, Austria; 5Association Care Web (Verein Sorgenetz), Vienna, Austria Idea: Two observations in hospice services and grief counselling of Malteser Germany resulted in this project. 1) Severely ill young clients wished for volunteers the same age as they are, which are currently rare. 2) Teens and young adults hospice volunteers met during projects on death literacy at school wished to get more involved in hospice movement themselves. But hospice services lack experience with volunteers under the age of 30. Main goals are to experiment on new ways to bring young adults in contact with hospice care, grief counselling and related topics, to broaden the possibilities of voluntary work in hospice movement and to develop various training formats to prepare people for volunteering. Therefore, ways of working and structures of services and institutions need to be evaluated and adjusted. Implementation: During 2019 to 2022 twelve chosen hospice services and facilities in Germany implemented individual ideas how to get in contact and work with young adults within their local structures. During three annual collective meetings moderated by researchers (KW, PS) project ideas and results were discussed and counselled, best practices shared and new inspiration for local projects given. Finally, findings and ideas were share with the hospice movement in a symposium and a workbook. All over the project active participation of young people is a central feature. Lessons learned: Most important, young adults wish to take responsibility for a caring society. Therefore, create opportunities for young adults to start a dialogue about life and death and to get to know the hospice movement and its central qualities. Cooperations with different educational and cultural institutions are recommended. When interested, offer gradually intensifying ways of engaging in hospice movement to enable a prompt start in volunteering and first practical experiences for young adults they can further build on. Within services and institutions value diversity in people, tasks and ways of training and supervision. Thus, acknowledge individual strengths and experiences different people contribute to the movement. Bring together the new and young and the old and approved as both share the same core values of hospice care and their motivation for volunteering is similar. Finally, volunteers in hospice movement are more than companions to the dying. They serve as multiplier of the hospice culture within their own peer groups contributing to increasing death literacy in society. Caring Community Köln – lessons learnt so far 1Caring Community Köln, Palliative and Hospice Network e.V., Germany; 2Endlich. Palliative & Hospice Cologne e. V., Germany; 3City of Cologne, Health Department, Germany; 4University of Cologne, Faculty of Medicine and University Hospital, Department of Palliative Medicine, Germany Idea Realisation The City of Cologne is a central partner of the initiative with its responsibility to provide public services of general interest and to promote public health - also as a member of the Healthy Cities Network. A steering group, the round table, four topic-related working groups and the coordination office have been established so far. While the round Table serves the participation of urban society, the building of consensus and the networking oft he stakeholders, the steering Group is responsible for conceptualisation and process ma-nagement. The coordination office is the central point of contact for committed and interested parties. In addition to the working groups - Grief in the Workplace, Children & Young People, Care and Care City Plan - projects such as the Buddy-Project for the seriously ill and their relatives, LAUT: last aiders at the workplace for a sensitive approach to dying, death and bereavement or the Cologne Death Café are bundled and implemented under the umbrella of the CCK. Regular dialogue with citizens takes place in citizens' forums. Conclusions | ||