Expanding the Understanding of Content of End-of-Life Dreams and Visions: A Consensual Qualitative Research Analysis.
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ABSTRACT:
SUBMITTER: Depner RM
PROVIDER: S-EPMC8241341 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BackgroundThe 3 Wishes Project (3WP) is an end-of-life program that honors the dignity of dying patients by fostering meaningful connections among patients, families, and clinicians. Since 2013, it has become embedded in the culture of end-of-life care in over 20 ICUs across North America. The purpose of the current study is to describe the variation in implementation of 3WP across sites, in order to ascertain which factors facilitated multicenter implementation, which factors remain consistent across sites, and which may be adapted to suit local needs.MethodsUsing the methodology of qualitative description, we collected interview and focus group data from 85 clinicians who participated in the successful initiation and sustainment of 3WP in 9 ICUs. We describe the transition between different models of 3WP implementation, from core clinical program to the incorporation of various research activities. We describe various sources of financial and in-kind resources accessed to support the program.ResultsBeyond sharing a common goal of improving end-of-life care, sites varied considerably in organizational context, staff complement, and resources. Despite these differences, the program was successfully implemented at each site and eventually evolved from a clinical or research intervention to a general approach to end-of-life care. Key to this success was flexibility and the empowerment of frontline staff to tailor the program to address identified needs with available resources. This adaptability was fueled by cross-pollination of ideas within and outside of each site, resulting in the establishment of a network of like-minded individuals with a shared purpose.ConclusionsThe successful initiation and sustainment of 3WP relied on local adaptations to suit organizational needs and resources. The semi-structured nature of the program facilitated these adaptations, encouraged creative and important ways of relating within local clinical cultures, and reinforced the main tenet of the program: meaningful human connection at the end of life. Local adaptations also encouraged a team approach to care, supplementing the typical patient-clinician dyad by explicitly empowering the healthcare team to collectively recognize and respond to the needs of dying patients, families, and each other.Trial registrationNCT04147169 , retrospectively registered with clinicaltrials.gov on October 31, 2019.
| S-EPMC7325646 | biostudies-literature
Project description:Both non-rapid eye movements and rapid eye movements sleep facilitate the strengthening of newly encoded memory traces, and dream content reflects this process. Numerous studies evaluated the impact of diseases on dream content, with particular reference to cancer, and reported the presence of issues related to death, negative emotions, pain and illness. This study investigates death and illness experiences in 13 consecutive patients with sarcoma compared to paired controls, early after diagnosis, evaluating dream contents, fear of death, mood and anxiety, distress, and severity of disease perception (perceived and communicated). Ten patients and 10 controls completed the study. Dream contents were significantly different between patients and normative data (DreamSat) and patients and controls (higher presence of negative emotions, low familiar settings and characters and no success involving the dreamer). Illness and death were present in 57% of patients' dreams (0% among controls), but no differences emerged between patients and controls in regard to anxiety and depression, distress and fear of death, even if the severity of illness was correctly perceived. The appearance of emotional elements in dreams and the absence of conscious verbalization of distress and/or depressive or anxious symptoms by patients could be ascribed to the time required for mnestic elaboration (construction/elaboration phase) during sleep.
| S-EPMC7464967 | biostudies-literature
Project description:This article calls on sustainability researchers to place visions of the future at the center of their analyses. Recognizing humans as reflexive elements of socio-ecological systems, it proceeds from the premise that how people think about the future has significant consequences for the realities that ultimately ensue. The ideas presented here are informed by a qualitative/open-form survey designed to illuminate respondents' visions of the future. Completed by participants in the Transition movement for climate change resilience, survey responses indicate that Transition participants' visions are both exceptionally holistic and consciously connected to their present actions. These findings have important implications for the development of sustainable programs and systems. More broadly, this article argues that exploring how individuals and groups envision the future offers (1) a new appreciation of conceptions of the future as distinctive (sub)cultural attributes, (2) an understanding of how visions of the future influence actions in the present, (3) an enhanced capacity for anticipation and proactive response, and (4) opportunities to inspire diverse audiences by conveying the possibility of positive futures. Acknowledging the ability of engaged scholarship to change not only how people imagine the world but also how the material world takes shape, this work underscores researchers' moral obligation to contribute to the creation of more sustainable futures.Supplementary informationThe online version contains supplementary material available at 10.1007/s43545-022-00356-1.
| S-EPMC9035204 | biostudies-literature
Project description:BackgroundPalliative care provision should be driven by high quality research evidence. However, there are barriers to conducting research. Most research attention focuses on potential patient barriers; staff and organisational issues that affect research involvement are underexplored. The aim of this research is to understand professional and organisational facilitators and barriers to conducting palliative care research.MethodsA mixed methods study, using an open cross-sectional online survey, followed by working groups using nominal group techniques. Participants were professionals interested in palliative care research, working as generalist/specialist palliative care providers, or palliative care research staff across areas of North West England. Recruitment was via local health organisations, personal networks, and social media in 2022. Data were examined using descriptive statistics and content analysis.ResultsParticipants (survey n = 293, working groups n = 20) were mainly from clinical settings (71%) with 45% nurses and 45% working more than 10 years in palliative care. 75% were not active in research but 73% indicated a desire to increase research involvement. Key barriers included lack of organisational research culture and capacity (including prioritisation and available time); research knowledge (including skills/expertise and funding opportunities); research infrastructure (including collaborative opportunities across multiple organisations and governance challenges); and patient and public perceptions of research (including vulnerabilities and burdens). Key facilitators included dedicated research staff, and active research groups, collaborations, and networking opportunities.ConclusionsProfessionals working in palliative care are keen to be research active, but lack time, skills, and support to build research capabilities and collaborations. A shift in organisational culture is needed to enhance palliative care research capacity and collaborative opportunities across clinical and research settings.
| S-EPMC11202245 | biostudies-literature
Project description:Coronavirus are the causative agents in many globally concerning respiratory disease outbreaks such as severe acute respiratory syndrome (SARS), Middle East respiratory syndrome (MERS) and coronavirus disease-2019 (COVID-19). It is therefore important that we improve our understanding of how the molecular components of the virus facilitate the viral life cycle. These details will allow for the design of effective interventions. Krichel and coauthors in their article in the Biochemical Journal provide molecular details of how the viral polyprotein (nsp7-10) produced from the positive single stranded RNA genome, is cleaved to form proteins that are part of the replication/transcription complex. The authors highlight the impact the polyprotein conformation has on the cleavage efficiency of the main protease (Mpro) and hence the order of release of non-structural proteins 7-10 (nsp7-10) of the SARS-CoV. Cleavage order is important in controlling viral processes and seems to have relevance in terms of the protein-protein complexes formed. The authors made use of mass spectrometry to advance our understanding of the mechanism by which coronaviruses control nsp 7, 8, 9 and 10 production in the virus life cycle.
| S-EPMC7200640 | biostudies-literature
Project description:BackgroundPhysicians caring for elderly people encounter death and dying more frequently than their colleagues in most other disciplines. Therefore we sought to examine the end-of-life content in popular geriatric textbooks and determine their usefulness in helping geriatricians manage patients at the end of their lives.MethodsFive popular geriatric textbooks were chosen. Chapters on Alzheimer's disease, stroke, chronic heart failure, chronic obstructive pulmonary disease and lung cancer were examined because of their high mortality rates among the elderly patients. Text relevant to end-of-life care was highlighted. Two reviewers independently coded text into 10 pre specified domains and rated them for the presence of end-of-life information. Content was rated as absent, minimally helpful, or helpful. The proportion of helpful information was calculated.ResultsThe textbook with the best end-of-life coverage contained 38% helpful information, the worst had only 15% helpful information. Minimally helpful information ranged from 24% to 50%. As much as 61% of the content in one textbook contained no helpful information at all. Of the ten domains, epidemiology, disease progression and prognostic factors were fairly well covered. Information on advance care planning, ethical issues, decision making and effects of death and dying on patient's family were generally lacking under the individual diseases though they were covered as general topics in other parts of the textbooks. All except one textbook dedicated a chapter to the care of the dying.ConclusionThis study showed that end-of-life content in geriatric textbooks differed significantly. Most of the textbooks lack good coverage on end-of-life care and more can be done to improve on this.
| S-EPMC1501002 | biostudies-literature
Project description:We used crowdsourcing (CS) to examine how COVID-19 lockdown affects the content of dreams and nightmares. The CS took place on the sixth week of the lockdown. Over the course of 1 week, 4,275 respondents (mean age 43, SD = 14 years) assessed their sleep, and 811 reported their dream content. Overall, respondents slept substantially more (54.2%) but reported an average increase of awakenings (28.6%) and nightmares (26%) from the pre-pandemic situation. We transcribed the content of the dreams into word lists and performed unsupervised computational network and cluster analysis of word associations, which suggested 33 dream clusters including 20 bad dream clusters, of which 55% were pandemic-specific (e.g., Disease Management, Disregard of Distancing, Elderly in Trouble). The dream-association networks were more accentuated for those who reported an increase in perceived stress. This CS survey on dream-association networks and pandemic stress introduces novel, collectively shared COVID-19 bad dream contents.
| S-EPMC7560506 | biostudies-literature
Project description:BACKGROUND:Hospital admissions for end-of-life patients, particularly those who die shortly after being admitted, are recognised to be an international policy problem. How patients come to be transferred to hospital for care, and the central role of decisions made by ambulance staff in facilitating transfer, are under-explored. AIM:To understand the role of ambulance staff in the admission to hospital of patients close to the end of life. DESIGN:Qualitative interviews, using particular patient cases as a basis for discussion, analysed thematically. PARTICIPANTS/SETTING:Ambulance staff ( n = 6) and other healthcare staff (total staff n = 30), involved in the transfer of patients (the case-patients) aged more than 65 years to a large English hospital who died within 3 days of admission with either cancer, chronic obstructive pulmonary disease or dementia. RESULTS:Ambulance interviewees were broadly positive about enabling people to die at home, provided they could be sure that they would not benefit from treatment available in hospital. Barriers for non-conveyance included difficulties arranging care particularly out-of-hours, limited available patient information and service emphasis on emergency care. CONCLUSION:Ambulance interviewees fulfilled an important role in the admission of end-of-life patients to hospital, frequently having to decide whether to leave a patient at home or to instigate transfer to hospital. Their difficulty in facilitating non-hospital care at the end of life challenges the negative view of near end-of-life hospital admissions as failures. Hospital provision was sought for dying patients in need of care which was inaccessible in the community.
| S-EPMC6158685 | biostudies-literature
Project description:OBJECTIVES:To present and discuss the views of researchers at an academic palliative care research centre on research encounters with terminally ill patients in the home setting and to generate a list of recommendations for qualitative researchers working in palliative and end-of-life care. METHODS:Eight researchers took part in a consensus meeting to discuss their experiences of undertaking qualitative interviews. The researchers were of varying backgrounds and all reported having experience in interviewing terminally ill patients, and all but one had experience of interviewing patients in their home environment. RESULTS:The main areas discussed by researchers included: whether participation in end-of-life research unintentionally becomes a therapeutic experience or an ethical concern; power relationships between terminally ill patients and researchers; researcher reflexivity and reciprocity; researchers' training needs. Qualitative methods can complement the home environment; however, it can raise ethical and practical challenges, which can be more acute in the case of research undertaken with palliative and patients at the end-of-life. CONCLUSIONS:The ethical and practical challenges researchers face in this context has the potential to place both participant and researcher at risk for their physical and psychological well-being. We present a set of recommendations for researchers to consider prior to embarking on qualitative research in this context and advocate researchers in this field carefully consider the issues presented on a study-by-study basis.
| S-EPMC6579488 | biostudies-literature
Project description:BackgroundSymptom management is an essential aspect of palliative and end-of-life care, but evidence suggests that patients' symptoms may not always be relieved, causing significant harm to patients and magnifying their relatives' distress. A growing body of evidence focuses on symptom management at the end-of-life, but research funding for palliative care remains disproportionately low. It is therefore crucial that research funding is targeted at areas of importance to patients and relatives. The Palliative and end-of-life care Priority Setting Partnership (PeolcPSP) undertook a UK-wide free-text survey to establish research priorities within palliative and end-of-life care and disseminated its results in 2015. Much of the data were related more broadly to personal perceptions and experiences rather than specific research questions. The aim of this article is to report on a supplementary analysis exploring the experiences and questions of PeolcPSP survey respondents regarding symptoms, hydration and nutrition.MethodsThe PeolcPSP data (n =?1403) were coded by a team of qualitative researchers in a supplementary analysis. There were 190 responses that related to symptoms, nutrition and hydration. The data were analysed thematically using Braun and Clarke's approach.ResultsFive themes were identified: pain, breathlessness, agitation, nutrition and hydration. The majority of responses related to symptoms that were sub-optimally managed, in particular pain. Nutrition and hydration were of significant concern, particularly for carers. Overall, respondents consistently asked about the most effective, evidence-based methods for managing symptoms and suggested areas where further research is necessary.ConclusionsThis study highlights the perceptions and experiences of patients, families and professionals within palliative care, highlighting the need for improved care, communication and further research to establish which treatments are most effective within a palliative care population. This is essential to reduce harm and distress for patients and families.
| S-EPMC5901670 | biostudies-literature