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Background Active involvement of persons living with dementia (PLWD) and long-term care (LTC) users in research is essential but less developed compared to other patient groups. However, their involvement in research is not only important but also feasible. This study aims to provide an overview of methods, facilitators, and barriers for involving PLWD and LTC users in scientific research. Methods A systematic literature search across 12 databases in December 2020 identified studies involving PLWD, LTC users, or their carers beyond research subjects and describing methods or models for involvement. Qualitative descriptions of involvement methods underwent a risk of bias assessment using the Critical Appraisal Skills Programme (CASP) Qualitative Checklist 2018. A data collection sheet in Microsoft Excel and thematic analysis were used to synthesize the results. Results The eighteen included studies delineated five core involvement methods spanning all research phases: advisory groups, formal and informal research team meetings, action groups, workshops, and co-conducting interviews. Additionally, two co-research models with PLWD and carers were found, while only two studies detailed LTC user involvement methods. Four distinct involvement roles were identified: consulting and advisory roles, co-analysts, co-researchers, and partners. The review also addressed barriers, facilitators, and good practices in the preparation, execution, and translation phases of research, emphasizing the importance of diversity, bias reduction, and resource allocation. Trust-building, clear roles, ongoing training, and inclusive support were highlighted. Conclusions Planning enough time for active involvement is important to ensure that researchers have time to build a trusting relationship and meet personal needs and preferences of PLWD, LTC users and carers. Researchers are advised not to presume the meaning of burden and to avoid a deficit perspective. A flexible or emergent design could aid involved persons’ ownership of the research process. Trial registration Prospero 2021: CRD42021253736.

ObjectivesNursing homes are hit relatively hard by the COVID-19 pandemic. Dutch long-term care (LTC) organisations installed outbreak teams (OTs) to coordinate COVID-19 infection prevention and control. LTC organisations and relevant national policy organisations expressed the need to share experiences from these OTs that can be applied directly in COVID-19 policy. The aim of the ‘COVID-19 management in nursing homes by outbreak teams’ (MINUTES) study is to describe the challenges, responses and the impact of the COVID-19 pandemic in Dutch nursing homes. In this first article, we describe the MINUTES Study and present data characteristics.DesignThis large-scale multicentre study has a qualitative design using manifest content analysis. The participating organisations shared their OT minutes and other meeting documents on a weekly basis. Data from week 16 (April) to week 53 (December) 2020 included the first two waves of COVID-19.SettingNational study with 41 large Dutch LTC organisations.ParticipantsThe LTC organisations represented 563 nursing home locations and almost 43 000 residents.ResultsAt least 36 of the 41 organisations had one or more SARS-CoV-2 infections among their residents. Most OTs were composed of management, medical staff, support services staff, policy advisors and communication specialists. Topics that emerged from the documents were: crisis management, isolation of residents, personal protective equipment and hygiene, staff, residents’ well-being, visitor policies, testing and vaccination.ConclusionsOT meeting minutes are a valuable data source to monitor the impact of and responses to COVID-19 in nursing homes. Depending on the course of the COVID-19 pandemic, data collection and analysis will continue until November 2021. The results are used directly in national and organisational COVID-19 policy.

Key Summary Points Aim To provide an inventory and prioritisation of research questions amongst GEM professionals throughout Europe. Findings A list of 10 research questions was identified and prioritised. Message The list of research questions may serve as guidance for scientists, policymakers and funding bodies in prioritising future research projects. Purpose Geriatric Emergency Medicine (GEM) focuses on delivering optimal care to (sub)acutely ill older people. This involves a multidisciplinary approach throughout the whole healthcare chain. However, the underpinning evidence base is weak and it is unclear which research questions have the highest priority. The aim of this study was to provide an inventory and prioritisation of research questions among GEM professionals throughout Europe. Methods A two-stage modified Delphi approach was used. In stage 1, an online survey was administered to various professionals working in GEM both in the Emergency Department (ED) and other healthcare settings throughout Europe to make an inventory of potential research questions. In the processing phase, research questions were screened, categorised, and validated by an expert panel. Subsequently, in stage 2, remaining research questions were ranked based on relevance using a second online survey administered to the same target population, to identify the top 10 prioritised research questions. Results In response to the first survey, 145 respondents submitted 233 potential research questions. A total of 61 research questions were included in the second stage, which was completed by 176 respondents. The question with the highest priority was: Is implementation of elements of CGA (comprehensive geriatric assessment), such as screening for frailty and geriatric interventions, effective in improving outcomes for older patients in the ED? Conclusion This study presents a top 10 of high-priority research questions for a European Research Agenda for Geriatric Emergency Medicine. The list of research questions may serve as guidance for researchers, policymakers and funding bodies in prioritising future research projects.

Key summary points Aim To describe selection criteria for referral to geriatric rehabilitation, care provided, and recovery trajectories of post-COVID-19 patients referred to geriatric rehabilitation in Europe. Findings In the ten participating countries, patients showed recovery in daily functioning and quality of life, albeit at variable rates. This variation in recovery rates was accompanied by variation in geriatric rehabilitation selection criteria, patient characteristics, and provided rehabilitation care. Message The heterogeneity in recovery of post-COVID-19 patients admitted to geriatric rehabilitation, selection criteria, and organization of geriatric rehabilitation care highlights the need for harmonization of measurements in geriatric rehabilitation in order to perform explanatory research and optimize geriatric rehabilitation throughout Europe. Purpose There is variation in organization of geriatric rehabilitation across Europe. The purpose of this study was to describe the selection criteria for referral to geriatric rehabilitation, care provided, and recovery trajectories of post-COVID-19 patients referred to geriatric rehabilitation in Europe. Methods This observational cohort study included 723 patients in 59 care facilities for geriatric rehabilitation across 10 countries. Patient data were collected from medical records on admission to geriatric rehabilitation (between September 2020 and October 2021), discharge, 6 weeks and 6 months follow-up. The primary and secondary outcomes were recovery in daily functioning (Barthel Index) and Quality of Life (EQ-5D-5L) from admission to discharge. These were examined using linear mixed models with two levels (measurements nested in patients) and country as an independent variable. Random intercept and random linear slope parameters were added when they improved model fit. A survey about organization of geriatric rehabilitation for post-COVID-19 patients was filled out by country coordinators and data were analyzed using descriptive statistics and inductive coding of answers to open questions. Results Patients had a mean age of 75.7 years old and 52.4% were male. Many countries used various combinations of the selection criteria, such as functional status, age, frailty, Comprehensive Geriatric Assessment, comorbidities, and cognitive impairments. Most patients received physiotherapy (88.8%) and occupational therapy (69.7%), but there was substantial variance between countries in the percentages of patients that received protein or calorie enriched diets, oxygen therapy, and other treatment components. In all countries, patients showed recovery in daily functioning and quality of life, although there was variation in between countries in rate of recovery. Daily functioning seemed to increase most rapidly in the Czech Republic, Germany, and Russia. The steepest increases in quality of life were seen in the Czech Republic, Germany, and Spain. Conclusion Post-COVID-19 patients showed recovery during geriatric rehabilitation, albeit at variable rates. The observed variation may be explained by the heterogeneity in selection criteria and care provided. This study highlights the need for harmonization of measurements in geriatric rehabilitation order to perform explanatory research and optimize geriatric rehabilitation throughout Europe to ensure optimal patient recovery.

Background: Nursing home (NH) staff and residents have been prioritized to receive COVID-19 vaccinations. However, NH staff have been hesitant. This study explored what strategies were used to overcome this hesitancy and which of these were found to be important by NH staff to increase their willingness to take a COVID-19 vaccine. Methods: This study employed a sequential exploratory qualitative design. The COVID-19 MINUTES study aimed to describe the challenges presented by, responses to, and impact of the COVID-19 pandemic in NHs. The minutes of COVID-19 outbreak teams (COTs) in Dutch long-term care organizations (n = 41) were collected and coded using content analysis. Textual units from December 2020 to April 2021 that regarded strategies to increase staff’s vaccination willingness (n = 67) were selected. Subsequently, to validate these data, two panels of NH healthcare workers (HCWs) and policy workers (PWs) (n = 8) selected, discussed, and ranked the strategies that they found to be important using a modified nominal group technique. Results: The strategies described in the minutes included financial reimbursements, personal contact, story sharing, logistics support, role models, visual information, and written information. Except for financial reimbursement, all these strategies were considered important or very important by the panel participants. Some organizations combined multiple strategies. Conclusion: The strategies that were found important in combination may be used more broadly and should be developed further with the involvement of HCWs.

To protect nursing home residents from getting infected with COVID-19, several measures have been imposed. The aim of this study was to describe the impact of these measures on activities for Dutch nursing home residents, the conditions under which the activities could take place, and the considerations when making decisions about the (dis)continuation of activities. The study consisted of the data of the qualitative MINUTES-study. Textual units derived from documentation of an outbreak team (OT) meetings on activities, well-being, informal caregivers, and volunteers from 39 long-term care organizations were re-analyzed using a content analysis. The results shows that OTs more often discussed restarting and continuing activities than stopping activities during the COVID-19 pandemic. There were differences between time periods, but activities never completely stopped according to the minutes. Activities were offered in an adapted way, often under certain conditions, such as organizing activities at other locations (e.g., outside), with limited group size, and following specific guidelines. The main focus of the considerations made were the ability to adhere to the guidelines, the well-being of residents, ensuring safety, and balancing benefits versus risks given vaccination availability and coverage. Overall, the study showed that organizing activities for nursing home residents despite COVID-19 measures is possible.

The most severe COVID-19 infections and highest mortality rates are seen among long-term care residents. To reduce the risk of infection, physical distancing is important. This study investigates what physical distancing measures were discussed by COVID-19 outbreak teams of Dutch long-term care organizations and what challenges they encountered. The COVID-19 MINUTES study is a qualitative multi-center study (n = 41) that collected minutes of COVID-19 outbreak teams from March 2020 to October 2021. Textual units about distancing measures were selected and analyzed using manifest content analysis for the first wave: early March–early May 2020; the intermediate period of 2020: mid-May–mid-September 2020; and the second wave: late September 2020–mid-June 2021. During all periods, COVID-19 outbreak teams often discussed distancing visitors from residents. Moreover, during the first wave they often discussed isolation measures, during the intermediate period they often discussed distancing staff and volunteers from residents, and during both the intermediate period and the second wave they often discussed distancing among residents. During all periods, less often admission measures were discussed. Challenges persisted and included unrest among and conflicts between visitors and staff, visitors violating measures, resident non-adherence to measures, and staffing issues. The discussed distancing measures and corresponding challenges may guide local long-term care and (inter)national policymakers during the further course of the COVID-19 pandemic, outbreaks of other infectious diseases, and long-term care innovations.

Hoewel het belang van burger- en patiëntenparticipatie wordt erkend, ontbreekt een Nederlandse maat om de impact van participatie te evalueren. De Canadese Public and Patient Engagement Evaluation Tool (PPEET) is een Engelstalig instrument dat ontwikkeld is om participatie te evalueren. Het instrument bestaat uit drie modules, gericht op verschillende betrokkenen in het participatieproces: burger- of patiëntparticipanten, projectcoördinatoren en organisatiemanagers. Wij vertaalden dit instrument naar het Nederlands volgens de ‘vertalen-en-terugvertalen’-methode. Vervolgens vulden 46 deelnemers de vragenlijsten in, scoorden ze de vragen op helderheid en gaven ze schriftelijk feedback op de formulering van de vragen. De duidelijkheidsscores en het aantal volledige antwoorden gaven een beeld van de haalbaarheid van deze Nederlandse vertaling. De eerste stappen in de validatie van de vragenlijst werden gezet door Cronbach’s alfa ( α ) te berekenen over de meerkeuzevragen en met een thematische analyse van de antwoorden op de open vragen. De vragenlijst bleek haalbaar en consistent ( α  ≥ 0,70). De vertaling werd verder verbeterd door vragen te herformuleren en één vraag te verwijderen op basis van de feedback van de deelnemers. Toekomstige projecten kunnen deze vertaalde PPEET toetsen in een grotere groep, met aandacht voor de constructvaliditeit, en na validatie gebruiken om participatie te evalueren en vergelijken. Although the importance of public and patient engagement is being recognized, there was no Dutch measure to evaluate the impact of engagement. The Canadian Public and Patient Engagement Evaluation Tool (PPEET) is an English tool designed to evaluate engagement. The instrument consists of three modules, aimed at different stakeholders in the engagement process: participants, project coordinators and managers. We translated these into Dutch using the ‘forward and backward translation’ method. The questionnaire was completed, scored for clarity and provided with written feedback about the phrasing of the questions by 46 respondents. The clarity scores and missing answers provided an idea of the feasibility of this Dutch translation. First steps in validating the questionnaire were performed by calculating Cronbach’s alpha for the multiple choice questions and with a thematic analysis of the answers to the open questions. The questionnaire appeared to be feasible and consistent. The translation was further improved by reformulating questions and removing one question based on the feedback from the participants. Future projects can test this translated PPEET in a larger sample with attention for construct validity, and after validation, use the PPEET to evaluate engagement and compare engagement activities.

Samenvatting Hoewel het belang van burger- en patiëntenparticipatie wordt erkend, ontbreekt een Nederlandse maat om de impact van participatie te evalueren. De Canadese Public and Patient Engagement Evaluation Tool (PPEET) is een Engelstalig instrument dat ontwikkeld is om participatie te evalueren. Het instrument bestaat uit drie modules, gericht op verschillende betrokkenen in het participatieproces: burger- of patiëntparticipanten, projectcoördinatoren en organisatiemanagers. Wij vertaalden dit instrument naar het Nederlands volgens de ‘vertalen-en-terugvertalen’-methode. Vervolgens vulden 46 deelnemers de vragenlijsten in, scoorden ze de vragen op helderheid en gaven ze schriftelijk feedback op de formulering van de vragen. De duidelijkheidsscores en het aantal volledige antwoorden gaven een beeld van de haalbaarheid van deze Nederlandse vertaling. De eerste stappen in de validatie van de vragenlijst werden gezet door Cronbach’s alfa ( α ) te berekenen over de meerkeuzevragen en met een thematische analyse van de antwoorden op de open vragen. De vragenlijst bleek haalbaar en consistent ( α  ≥ 0,70). De vertaling werd verder verbeterd door vragen te herformuleren en één vraag te verwijderen op basis van de feedback van de deelnemers. Toekomstige projecten kunnen deze vertaalde PPEET toetsen in een grotere groep, met aandacht voor de constructvaliditeit, en na validatie gebruiken om participatie te evalueren en vergelijken.