BACKGROUND: Volunteers have always been integral to hospice and palliative care. However, their roles have been left relatively undefined and broad. AIM: This study aims to examine the role of hospice volunteers in German inpatient hospice and palliative care. The question we seek to answer is: What do hospice volunteers contribute to everyday life in inpatient hospice and palliative care units? METHODS: We undertook a multicenter, on-site qualitative interview study, utilizing problem-centered interviews with 16 volunteers from five inpatient hospice units and one hospital palliative care unit. Interviews were analyzed using grounded theory. RESULTS: Analysis of the interviews revealed three typical characteristics of how hospice volunteers' describe their own role: (1) performing small acts of kindness, (2) creating a family-like atmosphere, (3) expecting emotional experiences. A common theme across all categories is the emphasis on spontaneous actions and personal experiences. The process of dying becomes an experience interpreted by volunteers as enriching, as a gift, as a "teacher". CONCLUSION: Granting hospice volunteers freedom to act spontaneously and intuitively benefits hospice and palliative care delivery. Organizations should leave sufficient room for spontaneity in order to involve volunteers effectively. Open and unstandardized roles facilitate dynamic work practices.
Hospice Care , Hospices , Humans , Palliative Care/psychology , Inpatients , Hospice Care/psychology , Volunteers/psychology , Qualitative Research
BACKGROUND: In the context of the Covid-19 pandemic, institutional measures were decreed to protect nursing home residents from infection. Their appropriateness has been a subject of controversy. The aim of this work was to better understand the subjective perception of the protective measures during the Covid-19 pandemic by the nursing home residents in Bavaria and to shed light on the role of nursing staff and general practitioners in coping with the crisis. METHODS: Semi-structured interviews were conducted with residents of inpatient long-term care facilities. Data analysis was carried out by means of structured content analysis according to Kuckartz. RESULTS: A total of ten nursing home residents with various degrees of care were interviewed, five of whom had already been infected with Covid-19 at the time of the survey. The respondents reported, on the one hand, their need for protection and, on the other hand, the isolation they experienced during the pandemic. Trust in the care provided by the nursing staff was emphasized. A reliable personal contact to already known general practitioners was missing. CONCLUSION: The role of nurses and general practitioners deserves more attention and may be a key to better acceptance and management of such crisis situations.
COVID-19 , Humans , Nursing Homes , Pandemics , Germany , Perception
BACKGROUND: Despite general practitioners' (GPs') key role in Germany`s primary health care, clinical research in general practice is scarce. Clinical research is mainly conducted at inpatient facilities, although their results are rarely transferable. German GPs have no extra time or funding for research, as well as limited research training. To support clinical research in German primary health care, practice-based research networks (PBRNs) are developed. As they will be based on an active involvement of GPs, we need more information on GPs` participation-readiness. The aim of this study was to explore facilitators and barriers to participation in the Bavarian Research Practice Network (BayFoNet) from the GPs`perspective before clinical trials will be performed. METHODS: We have performed semi-structured qualitative interviews with a purposive sample of 20 Bavarian GPs in 2022 under the application of the consolidated framework for implementation research (CFIR). Transcriptions were analysed according to Kuckartz` qualitative content analysis. The five domains of the CFIR framework served as initial deductive codes. RESULTS: N = 14 interviewees already agreed to participate in BayFoNet, whereas n = 6 interviewees opted not to participate in BayFoNet at the time of data collection. Main facilitators to conduct clinical research within BayFoNet were the motivation to contribute to evidence strength and quality in general practice, professional development and training of practice staff, as well as networking. Barriers for an active participation were bad experiences with previous clinical studies and lack of resources. CONCLUSIONS: PBRNS in Germany have to be promoted and the entire practice team has to be involved at an early stage of development. Professional training of general practice staff and a living network might enhance engagement. Participatory approaches could help to develop acceptable and feasible study designs. Furthermore, PBRNs should support patient recruitment and data collection in general practices and disseminate the results of their research projects regularly to maintain GPs` engagement. TRIAL REGISTRATION: DRKS00028805, NCT05667207.
General Practice , General Practitioners , Humans , Motivation , Attitude of Health Personnel , General Practice/methods , Qualitative Research
BACKGROUND: Palliative Care also encompasses the dimension of spiritual pain. Pastoral care workers and chaplains are specialists in the provision of spiritual care. Decreasing religious affiliation and increasing spiritual diversification in modern societies raise the question of the function of pastoral care. AIM: The goal of this study is to answer the question of what pastoral care workers can offer to dying residents in hospices and palliative care units. DESIGN: A qualitative interview study was designed to explore the specific perspective of pastoral care workers in a multidisciplinary environment. The study is based on differentiation theory which is particularly well adjusted to reveal differences in perspectives in so called 'holistic' care settings. The reporting follows the COREQ guidelines. SETTING: Problem centered interviews were conducted at five hospices and two palliative care units. RESULTS: Eight pastoral care workers were interviewed (5 Catholic, 3 Protestant, mean age of 58 years). The analysis of the interviews revealed three major themes: (A) Self-positioning in relation to the organization, (B) Offering conversations to patients and relatives, (C) Performing religious rituals. Minor themes were: mediating conflicts between patients, relatives and staff, sensing moods in silence with patients and organizing workshops for staff. CONCLUSION: In modern hospice care, pastoral care workers routinely address the problem of making death more tangible and of answering the unanswerable question of what comes afterwards. Through this, they support dying residents in hospices and palliative care units in dealing with the inexplicability of death.
INTRODUCTION: People in need of care or support are severely affected by the COVID-19 pandemic. We lack valid data of long-term assessments. We present a register study to detect the physical and psychosocial impact of the COVID-19 pandemic on people in need of care or support in Bavaria, Germany. To describe the persons' life conditions comprehensively, we assess the perspectives and needs of the respective care teams too. Results will serve as evidence-based source to manage the pandemic and long-term prevention strategies. METHODS AND ANALYSIS: The 'Bavarian ambulatory COVID-19 Monitor' is a multicentre registry including a purposive sample of up to 1000 patient-participants across three study sites in Bavaria. The study group consists of 600 people in need of care with a positive SARS-CoV-2 PCR test. Control group 1 comprises 200 people in need of care with a negative SARS-CoV-2 PCR test, while control group 2 comprises 200 people with a positive SARS-CoV-2 PCR test but are not in need of care. We assess the clinical course of infection, psychosocial aspects and care needs using validated measures. Follow-up is every 6 months for up to 3 years. Additionally, we assess up to 400 people linked to these patient-participants (caregivers, general practitioners (GPs)) for their health and needs. Main analyses are stratified by level of care I-V (I=minor/V=most severe impairment of independence), inpatient/outpatient care setting, sex and age. We use descriptive and inferential statistics to analyse cross-sectional data and changes over time. In qualitative interviews with 60 stakeholders (people in need of care, caregivers, GPs, politicians), we explore interface problems of different functional logics, of everyday and professional perspectives. ETHICS AND DISSEMINATION: The Institutional Review Board of the University Hospital LMU Munich (#20-860) and the study sites (Universities of Wurzburg and Erlangen) approved the protocol. We disseminate the results by peer-reviewed publications, international conferences, governmental reports, etc.
COVID-19 , Humans , COVID-19/epidemiology , SARS-CoV-2 , Pandemics/prevention & control , Cross-Sectional Studies , Outpatients
How will the coronavirus disease 2019 (COVID-19) pandemic develop in the coming months and years? Based on an expert survey, we examine key aspects that are likely to influence the COVID-19 pandemic in Europe. The challenges and developments will strongly depend on the progress of national and global vaccination programs, the emergence and spread of variants of concern (VOCs), and public responses to non-pharmaceutical interventions (NPIs). In the short term, many people remain unvaccinated, VOCs continue to emerge and spread, and mobility and population mixing are expected to increase. Therefore, lifting restrictions too much and too early risk another damaging wave. This challenge remains despite the reduced opportunities for transmission given vaccination progress and reduced indoor mixing in summer 2021. In autumn 2021, increased indoor activity might accelerate the spread again, whilst a necessary reintroduction of NPIs might be too slow. The incidence may strongly rise again, possibly filling intensive care units, if vaccination levels are not high enough. A moderate, adaptive level of NPIs will thus remain necessary. These epidemiological aspects combined with economic, social, and health-related consequences provide a more holistic perspective on the future of the COVID-19 pandemic.
The general practitioner is fundamentally dealing with uncertainty. On the one hand, we want to demonstrate that uncertainty cannot simply be stipulated as a matter of fact. Instead, we will show that this uncertainty is a performative effect of the primary care setting. On the other hand, we want to point out that the general practitioner's ability to bear uncertainty is a genuinely hypermodern way of productively dealing with uncertainty.
General Practice/trends , Physician's Role/psychology , Primary Health Care/trends , Social Change , Uncertainty , Adaptation, Psychological , Clinical Competence , Communication , Cooperative Behavior , Forecasting , General Practice/organization & administration , Germany , Humans , Interdisciplinary Communication , Physician-Patient Relations , Primary Health Care/organization & administration , Social Conditions , Specialization/trends
Visual art because of its artistic context can be related to the general idea of providing alternative perceptual experiences. However, research examining the neural basis of art beyond the paradigm of beauty has been neglected. This study seeks to determine how the perception of a body in an artwork can be distinguished from the perception of a body in a non-artistic photography. While viewing different body representations in both artworks and photographs, subjects were required to evaluate the appeal of the portrayed persons. By using functional magnetic resonance imaging (fMRI) we show that the perception of a body within the context of art leads to a higher activation in the right parietal cortex and the extrastriate cortex bilaterally. Relating this result to concepts from previous research, we suggest that the perception of art is linked to visuo-spatial coding and also motor mapping. In contrast, the higher activity in the ventromedial prefrontal cortex and the primary visual cortex during the perception of a body in a non-artistic frame of reference, i.e. in a photograph, can be linked to processes of person evaluation. Possibly, the task to judge the appeal of a person in a photograph might be more daunting and, thus, cause emotional and even moral challenges being reflected in the ventromedial prefrontal activity. Taken together, perceptual experiences within an artistic vs. a non-artistic frame of reference are based on distinct patterns of neuronal activity.
Art , Brain Mapping , Brain/physiology , Photography , Visual Perception/physiology , Adult , Female , Humans , Image Processing, Computer-Assisted , Magnetic Resonance Imaging , Male , Middle Aged
