Dying in times of the coronavirus: An online survey among healthcare professionals about end-of-life care for patients dying with and without COVID-19 (the CO-LIVE study).
Ontology highlight
ABSTRACT: Background
During the COVID-19 outbreak restricting measures may have affected the provision of good end-of-life care for patients with and without COVID-19.Aim
To describe characteristics of patients who died and the care they received, and to examine how patient characteristics, setting and visiting restrictions are related to provided care and evaluation of the dying process.Design
An open observational online survey among healthcare professionals about their experience of end-of-life care that was provided to a patient with or without COVID-19 who died between March and July 2020.Setting/participants
Healthcare professionals (nurses, physicians and others) in the Netherlands from all settings: home (n = 163), hospital (n = 249), nursing home (n = 192), hospice (n = 89) or elsewhere (n = 68).Results
Of patients reported on, 56% had COVID-19. Among these patients, 358 (84.4%) also had a serious chronic illness. Having COVID-19 was negatively, and having a serious chronic illness was positively associated with healthcare staff's favourable appreciation of end-of-life care. Often there had been visiting restrictions in the last 2 days of life (75.8%). This was negatively associated with appreciation of care at the end of life and the dying process. Finally, care at the end of life was less favourably appreciated in hospitals and especially nursing homes, and more favourably in home settings and especially hospices.Conclusions
Our study suggests that end-of-life care during the COVID-19 pandemic may be further optimised, especially in nursing homes and hospitals. Allowing at least some level of visits of relatives seems a key component.
SUBMITTER: Onwuteaka-Philipsen BD
PROVIDER: S-EPMC8114455 | biostudies-literature |
REPOSITORIES: biostudies-literature
Similar Datasets
Project description:BackgroundThe purpose of this study was to examine the differing perspectives and perceptual gaps relating to ulcerative colitis (UC) symptoms and their management between patients and healthcare professionals (HCPs).MethodsStructured, cross-sectional, Web-based questionnaires designed to assess a variety of disease indices were completed by adult patients with UC and HCPs involved in the care of patients with UC from Canada, France, Germany, Ireland, Spain, and the United Kingdom.ResultsSurveys were completed by 775 patients, 475 physicians, and 50 nurses. Patient self-reported classification of disease severity revealed generally greater severity (mild, 32%; moderate, 53%) compared with physician and nurse estimates of UC severity among their caseloads (mild, 52% and 49%; moderate, 34% and 37%, respectively). Patients reported that an average of 5.5 (standard deviation, 11.0) flares (self-defined) occurred over the past year, compared with 3.4 and 3.8 flares per year estimated by physicians and nurses. Perceived flare triggers differed between patients (stress ranked first) and HCPs (natural disease course ranked first). Fifty-five percent of patients stated that UC symptoms over the past year had affected their quality of life, while physicians and nurses estimated that 35% to 37% of patients would have a reduced quality of life over the same period. Patients ranked urgency and pain as the most bothersome symptoms, while physicians and nurses ranked urgency and stool frequency highest. About half of patients (47%) defined remission as experiencing no symptoms; by comparison, 62% to 63% of HCPs defined remission as requiring the complete absence of symptoms. HCPs (doctors/nurses in general practice and/or hospital) were regarded by patients as their main source of UC information by 72%; however, 59% reported not arranging regular visits to see their HCPs.ConclusionsThis large survey identified important differences between patients' and HCPs' perceptions of the impact of UC symptoms on patients' lives. Notably, HCPs may underestimate the effect of specific UC symptoms on patients and may fail to recognize issues that are important to patients.
| S-EPMC3523079 | biostudies-literature
Project description:BackgroundHealthcare professionals play a key role in supporting physical activity participation for people with lower limb absence.ObjectivesThe objectives of this study were to survey healthcare professionals' views of people with lower limb absence in the United Kingdom, explore their awareness and knowledge of physical activity recommendations and investigate their current and desirable practice towards physical activity promotion.Study designCross-sectional study.MethodsPotential participants were identified from open-access health-related databases, educational institution databases, and the authors' professional networks. An online 40-item questionnaire was distributed electronically and by post. Survey items were multiple choice, Likert-type scale or open-ended questions to explore the characteristics of healthcare professionals, awareness/knowledge of physical activity guidelines, current and desired practice and views on physical activity promotion.ResultsIn total, 106 people responded. Physiotherapists had greater awareness/knowledge of physical activity guidelines compared to prosthetists/orthotists and other respondents. Awareness/knowledge of guidelines decreased as age, experience and time since qualification increased. The most common source of knowledge was self-directed learning.ConclusionContinuing and improving education on the content of physical activity guidelines may be helpful for healthcare professionals in promoting physical activity to those with lower limb absence.Clinical relevanceThis research aims to inform prosthetic rehabilitation professionals and academics about an under-researched area within physical activity for health. This knowledge could help develop interventions with the aim of improving physical activity promotion and participation, and ultimately the health and well-being of people with limb absence.
| S-EPMC7594372 | biostudies-literature
Project description:Objective: The outbreak of COVID-19 was declared a pandemic by the WHO in March 2020. Studies from China, where the virus first spread, have reported increased psychological strain in healthcare professionals. The aim of this study was to investigate the psychosocial burden of physicians and nurses depending on their degree of contact with COVID-19 patients. In addition, we explored which supportive resources they used and which supportive needs they experienced during the crisis. Methods: Data were collected between March and April 2020 at the University Hospital Augsburg. A total of 75 nurses and 35 physicians, working either in a special COVID-19 ward or in a regular ward, took part in the survey. The participants filled in two standardized questionnaires (the Patient Health Questionnaire, PHQ; and the Maslach Burnout Inventory, MBI), and reported their fear of a COVID-19 infection and stress at work on a 10-point Likert scale. Finally, they answered three open-ended questions about causes of burden, supportive resources and needs during the crisis. Results: Nurses working in the COVID-19 wards reported higher levels of stress, exhaustion, and depressive mood, as well as lower levels of work-related fulfilment compared to their colleagues in the regular wards. Physicians reported similar scores independent of their contact with COVID-19 patients. The most common causes for burden were job strain and uncertainty about the future. Psychosocial support as well as leisure time were listed as important resources, and a better infrastructure adjustment to COVID-19 at the hospital (e.g. sufficient staff, keeping teams and working schedules stable) as suggestion for improvement. Conclusions: Our findings indicate that especially nurses working in COVID-19 wards are affected psychologically by the consequences of the pandemic. This might be due to a higher workload and longer time in direct contact with COVID-19 patients, compared to physicians.
| S-EPMC7314868 | biostudies-literature
Project description:OBJECTIVES:To establish healthcare professionals' (HCPs) views about clinical roles, and the barriers and enablers to delivery of diabetes care for people with severe mental illness (SMI). DESIGN:Cross-sectional, postal and online survey. SETTING:Trusts within the National Health Service, mental health and diabetes charities, and professional bodies. PARTICIPANTS:HCPs who care for people with type 2 diabetes mellitus (T2DM) and/or SMI in the UK. PRIMARY AND SECONDARY OUTCOME MEASURES:The barriers, enablers and experiences of delivering T2DM care for people with SMI, informed by the Theoretical Domains Framework. RESULTS:Respondents were 273 HCPs, primarily mental health nurses (33.7%) and psychiatrists (32.2%). Only 25% of respondents had received training in managing T2DM in people with SMI. Univariate analysis found that mental health professionals felt responsible for significantly fewer recommended diabetes care standards than physical health professionals (P<0.001). For those seeing diabetes care as part of their role, the significant barriers to its delivery in the multiple regression analyses were a lack of knowledge (P=0.003); a need for training in communication and negotiation skills (P=0.04); a lack of optimism about the health of their clients (P=0.04) and their ability to manage T2DM in people with SMI (P=0.003); the threat of being disciplined (P=0.02); fear of working with people with a mental health condition (P=0.01); a lack of service user engagement (P=0.006); and a need for incentives (P=0.04). The significant enablers were an understanding of the need to tailor treatments (P=0.04) and goals (P=0.02) for people with SMI. CONCLUSIONS:This survey indicates that despite current guidelines, diabetes care in mental health settings remains peripheral. Even when diabetes care is perceived as part of an HCP's role, various individual and organisational barriers to delivering recommended T2DM care standards to people with SMI are experienced.
| S-EPMC5829882 | biostudies-other
Project description:Spondyloarthritis (SpA) is a group of inflammatory disorders, including axial SpA (axSpA), characterized by inflammation in the spine and sacroiliac joints. Healthcare professionals have a crucial role in diagnosing and managing axSpA. Assessing their knowledge, perceptions, and practices is essential to enhance patient care. The objective of this study is to evaluate these factors by conducting an online survey. This online survey was performed using SurveyMonkey.com to assess healthcare professionals' knowledge, perceptions, and practices related to axSpA diagnosis, management, and monitoring. The questionnaire included questions about definitions, management strategies, monitoring approaches, treatment options, and barriers to care. Convenience sampling was used, and the data were analyzed descriptively by Microsoft Excel. One hundred sixty-four healthcare professionals participated; most respondents were rheumatologists from various geographic locations (27 countries). Most participants were familiar with axSpA definitions and diagnostic criteria, demonstrating high expertise. Variations were seen in follow-up intervals and diagnostic preferences, reflecting clinical heterogeneity. Seventy-two (43.9%) individuals had a multidisciplinary team, frequently including rheumatologists, physiotherapists, and radiologists. Of the participants, 73 (44.5%) had online/telephone follow-up sessions. The pharmacological and non-pharmacological treatment approaches varied, pointing to the importance of personalized care. Glucocorticoid use varied among countries. Recognizing inflammatory back pain, interpreting radiographs, and diagnosing early was essential to medical education. This study provides beneficial data on healthcare professionals' knowledge, perceptions, and practices regarding axSpA. While diagnostic familiarity and multidisciplinary approach are positives, there is a potential to standardize management, improve telemedicine services, remove barriers to physical activity, and optimize treatment options.
| S-EPMC11222259 | biostudies-literature
Project description:IntroductionWhile the general uptake of e-mental health interventions remained low over the past years, physical distancing and lockdown measures relating to the COVID-19 pandemic created a need and demand for online consultations in only a matter of weeks.ObjectiveThis study investigates the uptake of online consultations provided by mental health professionals during lockdown measures in the first wave of the COVID-19 pandemic in the participating countries, with a specific focus on professionals' motivations and perceived barriers regarding online consultations.MethodsAn online survey on the use of online consultations was set up in March 2020. The Unified Theory of Acceptance and Use of Technology (UTAUT) guided the deductive qualitative analysis of the results.ResultsIn total, 2082 mental health professionals from Austria, Belgium, Cyprus, France, Germany, Italy, Lebanon, Lithuania, the Netherlands, Norway, Portugal, Spain, and Sweden were included. The results showed a high uptake of online consultations during the COVID-19 pandemic but limited previous training on this topic undergone by mental health professionals. Most professionals reported positive experiences with online consultations, but concerns about the performance of online consultations in a mental health context (e.g., in terms of relational aspects) and practical considerations (e.g., relating to privacy and security of software) appear to be major barriers that hinder implementation.ConclusionsThis study provides an overview of the mental health professionals' actual needs and concerns regarding the use of online consultations in order to highlight areas of possible intervention and allow the implementation of necessary governmental, educational, and instrumental support so that online consultations can become a feasible and stable option in mental healthcare.
| S-EPMC8350604 | biostudies-literature
Project description:The under-reporting of adverse drug events (ADEs) is an international health concern. A number of studies have assessed the root causes but, to our knowledge, little information exists relating under-reporting to practices and systems used for the recording and tracking of drug-related adverse event observations in ambulatory settings, institutional settings, and retail pharmacies.Our objective was to explore the process for reporting ADEs in US hospitals, ambulatory settings, and retail pharmacies; to explore gaps and inconsistencies in the reporting process; and to identify the causes of under-reporting ADEs in these settings.The Tufts Center for the Study of Drug Development (Tufts CSDD) interviewed 11 thought leaders and conducted a survey between May and August 2014 among US-based healthcare providers (HCPs) in diverse settings to assess their experiences with, and processes for, reporting ADEs.A total of 123 individuals completed the survey (42 % were pharmacists; 27 % were nurses; 15 % were physicians; and 16 % were classified as 'other'). HCPs indicated that the main reasons for under-reporting were difficulty in determining the cause of the ADE, given that most patients receive multiple therapies simultaneously (66 % of respondents); that HCPs lack sufficient time to report ADEs (63 % of respondents); poor integration of ADE-reporting systems (53 % of respondents); and uncertainty about reporting procedures (52 % of respondents).The results of this pilot study identify that key factors contributing to the under-reporting of ADEs relate to a lack of standardized process, a lack of training and education, and a lack of integrated health information technologies.
| S-EPMC5045838 | biostudies-other
Project description:BackgroundThe coronavirus pandemic, in particular the introduction of masks, presented a huge challenge for the UK's D/deaf community, many of whom rely on visual cues in lipreading and sign language. This particularly affected D/deaf healthcare professionals (HCPs), who faced significant communication challenges at work due to the lack of transparent masks or other reasonable adjustments.AimsTo determine the impact that a lack of transparent masks and reasonable adjustments had on communication, confidence at work and well-being among D/deaf HCPs during the coronavirus pandemic.MethodsA survey was sent to all members of the 'UK Deaf Healthcare Professionals Group' on Facebook, the 'Healthcare Professionals with Hearing Loss' listserver and promoted on Social Media.ResultsEighty-three responses were received. Nine (11%) individuals had access to transparent masks. Over three-quarters of respondents reported feeling anxious and fearful of making a mistake due to communication difficulties. Fourteen (17%) were removed from clinical roles due to a lack of reasonable adjustments. One-third felt they would need to consider an alternative career if improvements were not made. Seventy-eight per cent felt the communication needs of D/deaf HCPs had not been met during the pandemic.ConclusionsD/deaf HCPs felt left behind, isolated and frustrated by a lack of transparent masks and reasonable adjustments to meet their communication needs. Loss of experienced, qualified HCPs has a significant economic and workforce impact, particularly during a pandemic. Urgent action is needed to ensure D/deaf HCPs are provided with the workplace support required under the Equality Act (2010).
| S-EPMC8135376 | biostudies-literature
Project description:BackgroundHealthcare professionals outside of medicine (HCPs), including nurses, midwives and allied health professionals, are increasingly involved in research for patient benefit. Their challenge is to negotiate inter-professional or professionally isolated contexts. The aims of this study were to evaluate the 'Healthcare Professionals in Research' (HPiR) Facebook group (a self-directed and confidential peer support group for doctoral and postdoctoral HCPs) including engagement, the experiences of doctoral and postdoctoral HPiR members and to identify future career challenges using an on-line survey.MethodsThe HPiR Facebook group was launched in May 2019. Five HCP Community managers (CMs) were trained in on-line platform curation, moderation and screening. An on-line survey was designed to capture data from HPiR members. A purposive sampling approach was applied. Respondents were required to be doctoral and postdoctoral HCPs and a registered member of the HPiR group. Respondents represented a range of healthcare professions, 79 % of whom had over ten years clinical experience. Membership growth and engagement was analysed. Descriptive statistics were used to present numerical data. Qualitative data were analysed thematically.Results96 members were admitted to the group within the first month. All members were actively engaged with group content. 34/96 doctoral and postdoctoral HCPs completed the survey. Most members joined for networking (88 %) and peer support (82 %) purposes. Analysis of text responses showed difficulties in balancing a clinical academic career and highlighted the consequences of undefined clinical academic roles and pathways.ConclusionsDoctoral and postdoctoral HCPs value the opportunities that HPiR provides for peer support and connection with fellow HCPs. HPiR has the potential to strengthen research capacity, support research skill development and drive change within the clinical academic community. Clinical academic roles and pathways need to be standardised. The creation of opportunities beyond doctoral studies is a priority.
| S-EPMC8067642 | biostudies-literature
Project description:IntroductionTime in range (TIR) is a metric of glycaemic target management derived from continuous glucose monitoring (CGM) data. This study aimed to understand knowledge of and attitudes towards use of TIR among healthcare professionals (HCPs), and gain insights into benefits and barriers to its use in clinical practice.MethodsAn online survey was disseminated across seven countries. Participants were sampled from online HCP panels and were aware of TIR (defined as amount of time in, below, and above target range). Participants were HCPs classified as specialists (SP), generalists (GP), or allied HCPs (AP; diabetes nurse specialists, diabetes educators, general nurses, nurse practitioners/physician assistants).ResultsRespondents included 741 SP, 671 GP and 307 AP. Most HCPs (approximately 90%) agreed TIR is likely/somewhat likely to become the standard of diabetes management. Perceived benefits of TIR included helping to optimise medication regimen (SP, 71%; GP, 73%; AP, 74%), giving HCPs the knowledge and insights to make informed clinical decisions (SP, 66%; GP, 61%; AP, 72%), and empowering people with diabetes with information to successfully manage their diabetes (SP, 69%; GP, 77%; AP, 78%). Barriers to wider adoption included limited CGM access (SP, 65%; GP, 74%; AP, 69%) and lack of HCP training/education (SP, 45%; GP, 59%; AP, 51%). Most participants considered integration of TIR into clinical guidelines, recognition of TIR by regulators as a primary clinical endpoint, and recognition of TIR by payers as a parameter for diabetes treatment evaluation as key factors for increased use.ConclusionsOverall, HCPs agreed on the benefits of using TIR for diabetes management. Besides raising awareness among HCPs and people with diabetes, more training and healthcare system updates are needed to facilitate increased TIR use. In addition, integration into clinical guidelines and recognition by regulators and payers are needed.
| S-EPMC10299986 | biostudies-literature