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Background: Restrictions on family visitation to long-term care facilities (LTCFs) during the COVID-19 pandemic remain an area of contention for residents, family members and staff members. Current research has explored the experience of family members; however, fewer studies have explored the impact of visitation restrictions from the perspective of LTCF staff members. We examined the experiences of LTCF staff members in implementing visitation restrictions, including maintaining contact with families, in England over the course of the COVID-19 pandemic. Method : A sample of twenty-four LTCF staff members employed at eight LTCFs in one region of England was recruited. Qualitative, in-depth interviews were conducted with staff members to explore their experiences of implementing government policies during the COVID-19 pandemic. Thematic analysis was used to analyse data on maintaining contact and visitation with relatives. Results: Five broad themes were identified from the data. These were: (i) engaging with family members on visitation, (ii) facilitating visitation with family members, (iii) maintaining remote contact with family members, (iv) managing visitation restrictions with residents and (v) navigating equitable access for residents and family members. While some staff welcomed the introduction of national guidance on restrictions as a source to refer family members to for justification of the LTCFs' decisions to restrict access, others reflected on the negative effect of limited social contact on resident wellbeing and difficulties in implementing the guidance. At times, LTCFs felt conflicted in their responsibility for supporting family members in visiting at the same time as communicating, enforcing and policing visitation restrictions. Guidance on facilitating remote contact required substantial time and resources required to support it. Discussion: The extent to which restricting visitation was a proportionate response to reducing the spread of COVID-19, within the wider context of negative impacts on relatives and family members, is an ongoing debate. This study identified some of the challenges experiences by LTCF staff in implementing such guidance, and calls into question the practicality of restricting visitation. Further research is needed on how social contact can be maintained between relatives and their families during pandemics, which is both equitable and achievable.

Background: The disproportionate effect of COVID-19 on long term care facility (LTCF) residents has highlighted the need for clear, consistent guidance on the management of pandemics in such settings. As research exploring the experiences of LTCFs during the pandemic and the implications of mass hospital discharge, restricting staff movement, and limiting visitation from relatives are emerging, an in-depth review of policies, guidance and recommendations issued during this time could facilitate wider understanding in this area., Aims: To identify policies, guidance, and recommendations related to LTCF staff and residents, in England issued by the government during the COVID-19 pandemic, developing a timeline of key events and synthesizing the policy aims, recommendations, implementation and intended outcomes., Method: A scoping review of publicly available policy documents, guidance, and recommendations related to COVID-19 in LTCFs in England, identified using systematic searches of UK government websites. The main aims, recommendations, implementation and intended outcomes reported in included documents were extracted. Data was analysed using thematic synthesis following a three-stage approach: coding the text, grouping codes into descriptive themes, and development of analytical themes., Results: Thirty-three key policy documents were included in the review. Six areas of recommendations were identified: infection prevention and control, hospital discharge, testing and vaccination, staffing, visitation and continuing routine care. Seven areas of implementation were identified: funding, collaborative working, monitoring and data collection, reducing workload, decision making and leadership, training and technology, and communication., Discussion: LTCFs remain complex settings, and it is imperative that lessons are learned from the experiences during COVID-19 to ensure that future pandemics are managed appropriately. This review has synthesized the policies issued during this time, however, the extent to which such guidance was communicated to LTCFs, and subsequently implemented, in addition to being effective, requires further research. In particular, understanding the secondary effects of such policies and how they can be introduced within the existing challenges inherent to adult social care, need addressing., (© 2024. The Author(s).)

Background/aims: Serious adverse event reporting guidelines have largely been developed for pharmaceutical trials. There is evidence that serious adverse events, such as psychological distress, can also occur in non-pharmaceutical trials. Managing serious adverse event reporting and monitoring in palliative care non-pharmaceutical trials can be particularly challenging. This is because patients living with advanced malignant or non-malignant disease have a high risk of hospitalisation and/or death as a result of progression of their disease rather than due to the trial intervention or procedures. This paper presents a number of recommendations for managing serious adverse event reporting that are drawn from two palliative care non-pharmacological trials., Methods: The recommendations were iteratively developed across a number of exemplar trials. This included examining national and international safety reporting guidance, reviewing serious adverse event reporting procedures from other pharmacological and non-pharmacological trials, a review of the literature and collaboration between the ACTION study team and Data Safety Monitoring Committee. These two groups included expertise in oncology, palliative care, statistics and medical ethics and this collaboration led to the development of serious adverse event reporting procedures., Results: The recommendations included; allowing adequate time at the study planning stage to develop serious adverse event reporting procedures, especially in multi-national studies or research naïve settings; reviewing the level of trial oversight required; defining what a serious adverse event is in your trial based on your study population; development and implementation of standard operating procedures and training; refining the reporting procedures during the trial if necessary and publishing serious adverse events in findings papers., Conclusions: There is a need for researchers to share their experiences of managing this challenging aspect of trial conduct. This will ensure that the processes for managing serious adverse event reporting are continually refined and improved so optimising patient safety., Trial Registration: ACTION trial registration number: ISRCTN63110516 (date of registration 03/10/2014). Namaste trial registration number: ISRCTN14948133 (date of registration 04/10/2017).

Background: The number of older people dying in long-term care facilities is increasing; however, care at the end of life can be suboptimal. Interventions to improve palliative care delivery within these settings have been shown to be effective in improving care, but little is known about their implementation., Aim: The aim of this study was to describe the nature of implementation strategies and to identify facilitators and/or barriers to implementing palliative care interventions in long-term care facilities., Design: Scoping review with a thematic synthesis, following the ENTREQ guidelines., Data Sources: Published literature was identified from electronic databases, including MEDLINE, EMBASE, PsycINFO and CINAHL. Controlled, non-controlled and qualitative studies and evaluations of interventions to improve palliative care in long-term care facilities were included. Studies that met the inclusion criteria were sourced and data extracted on the study characteristics, the implementation of the intervention, and facilitators and/or barriers to implementation., Results: The review identified 8902 abstracts, from which 61 studies were included in the review. A matrix of implementation was developed with four implementation strategies (facilitation, education/training, internal engagement and external engagement) and three implementation stages (conditions to introduce the intervention, embedding the intervention within day-to-day practice and sustaining ongoing change)., Conclusion: Incorporating an implementation strategy into the development and delivery of an intervention is integral in embedding change in practice. The review has shown that the four implementation strategies identified varied considerably across interventions; however, similar facilitators and barriers were encountered across the studies identified. Further research is needed to understand the extent to which different implementation strategies can facilitate the uptake of palliative care interventions in long-term care facilities.

Long term care facilities (LTCFs) are increasingly a place of care at end of life in Europe. Longer residence in an LTCF prior to death has been associated with higher indicators of end of life care; however, the relationship has not been fully explored. The purpose of this analysis is to explore associations between length of stay and end of life care. The analysis used data collected in the Palliative Care for Older People in care and nursing homes in Europe (PACE) study, a cross-sectional mortality follow-back survey of LTCF residents who died within a retrospective 3-month period, conducted in Belgium, England, Finland, Italy, the Netherlands and Poland. Primary outcomes were quality of care in the last month of life, comfort in the last week of life, contact with health services in the last month of life, presence of advance directives and consensus in care. Longer lengths of stay were associated with higher scores of quality of care in the last month of life and comfort in the last week of life. Longer stay residents were more likely to have advance directives in place and have a lasting power of attorney for personal welfare. Further research is needed to explore the underlying reasons for this trend, and how good quality end of life care can be provided to all LTCF residents.

Objectives: This paper aims to investigate resident, facility and country characteristics associated with length of stay in long-term care facilities (LTCFs) across six European countries., Setting: Data from a cross-sectional study of deceased residents, conducted in LTCFs in Belgium, England, Finland, Italy, the Netherlands and Poland., Participants: All residents aged 65 years and older at admission who died in a 3-month period residing in a proportional random sample of LTCFs were included., Primary and Secondary Outcome Measures: The primary outcome was length of stay in days, calculated from date of admission and date of death. Resident, facility and country characteristics were included in a proportional hazards model., Results: The proportion of deaths within 1 year of admission was 42% (range 32%-63%). Older age at admission (HR 1.04, 95% CI 1.03 to 1.06), being married/in a civil partnership at time of death (HR 1.47, 95% CI 1.13 to 1.89), having cancer at time of death (HR 1.60, 95% CI 1.22 to 2.10) and admission from a hospital (HR 1.84, 95% CI 1.43 to 2.37) or another LTCF (HR 1.81, 95% CI 1.37 to 2.40) were associated with shorter lengths of stay across all countries. Being female (HR 0.72, 95% CI 0.57 to 0.90) was associated with longer lengths of stay., Conclusions: Length of stay varied significantly between countries. Factors prior to LTCF admission, in particular the availability of resources that allow an older adult to remain living in the community, appear to influence length of stay. Further research is needed to explore the availability of long-term care in the community prior to admission and its influence on the trajectories of LTCF residents in Europe., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Objective: Care homes are a common place of death for older adults, especially those with complex health needs or dementia. Representative, internationally comparable data on care home facilities and their residents is needed to monitor health and wellbeing in this population. Identification and collection of data from care homes can be challenging and often underreported. This paper draws on the experiences of the PACE study, a cross sectional mortality follow back study conducted in six European countries., Results: Multiple challenges were encountered in creating a sampling framework and contacting, recruiting and retaining care homes in the PACE study. Recruiting a randomly identified, representative cohort from a stratified sampling framework was problematic, as was engaging with care homes to ensure high response rates. Variation in the funding of care homes across the six countries involved in the study may explain the additional challenges encountered in England. Awareness of the challenges encountered in England in implementing an international study in care homes can inform the design and implementation of future studies within care homes. Further discussion is needed to determine the barriers and facilitators to conducting research in care homes, and how this is shaped by the focus of the study.

Background: Opioids, antipsychotics and hypnotics are recommended for comfort care in dying. We studied their prescription during the last 3 days in residents deceased in the long-term care facility (LTCF)., Methods: In a retrospective, cross-sectional survey in Belgium, England, Finland, Italy, the Netherlands and Poland, LTCFs, selected by proportional stratified random sampling, reported all deaths over the previous 3 months. The nurse most involved in the residents' care reviewed the chart for opioid, antipsychotic and hypnotic prescription, cause of death and comorbidities. Multivariable logistic regression was performed to adjust for resident characteristics., Results: Response rate was 81.6%. We included 1079 deceased residents in 322 LCTFs. Opioid prescription ranged from 18.5% (95% CI: 13.0-25.8) of residents in Poland to 77.9% (95% CI: 69.5-84.5) in the Netherlands, antipsychotic prescription from 4.8% (95% CI: 2.4-9.1) in Finland to 22.4% (95% CI: 14.7-32.4) in Italy, hypnotic prescription from 7.8% (95% CI: 4.6-12.8) in Finland to 47.9% (95% CI: 38.5-57.3) in the Netherlands. Differences in opioid, antipsychotic and hypnotic prescription between countries remained significant (P < 0.001) when controlling for age, gender, length of stay, cognitive status, cause of death in multilevel, multivariable analyses. Dying from cancer showed higher odds for receiving opioids (OR 3.51; P < 0.001) and hypnotics (OR 2.10; P = 0.010)., Conclusions: Opioid, antipsychotic and hypnotic prescription in the dying phase differed significantly between six European countries. Further research should determine the appropriateness of their prescription and refine guidelines especially for LTCF residents dying of non-cancer diseases.

Background: loneliness has an adverse effect on health and well-being, and is common at older ages. Evidence that it is a risk factor for care home admission is sparse., Objective: to investigate the association between loneliness and care home admission., Setting: English Longitudinal Study of Ageing (ELSA)., Participants: two-hundred fifty-four individuals across seven waves (2002-15) of ELSA who moved into care homes were age, sex matched to four randomly selected individuals who remained in the community., Methods: logistic regression models examined associations between loneliness, socio-demographic factors, functional status and health on moving into care homes., Results: loneliness (measured by the University of California, Los Angeles (UCLA) Loneliness Scale and a single-item question from the Center for Epidemiological Studies Depression Scale (CES-D)) was associated with moving into a care home (CES-D OR 2.13, 95% CI 1.43-3.17, P = 0.0002, UCLA OR 1.81, 95% CI 1.01-3.27, P = 0.05). The association persisted after adjusting for established predictors (age, sex, social isolation, depression, memory problems including diagnosis of Alzheimer's disease, disability, long-term physical health and wealth). The impact of loneliness (measured by CES-D) on admission accounted for a population attributable fraction of 19.9% (95% CI 7.8-30.4%)., Conclusions: loneliness conveys an independent risk of care home admission that, unlike other risk factors, may be amenable to modification. Tackling loneliness amongst older adults may be a way of enhancing wellbeing and delaying or reducing the demand for institutional care.

Objectives: To assess the feasibility of recruitment, retention, outcome measures and intervention training/delivery among teachers, parents and children. To calculate a sample size estimation for full trial., Design: A single-centre, unblinded, cluster feasibility randomised controlled trial examining Social Stories delivered within a school environment compared with an attentional control., Setting: 37 primary schools in York, UK., Participants: 50 participants were recruited and a cluster randomisation approach by school was examined. Participants were randomised into the treatment group (n=23) or a waiting list control group (n=27)., Outcome Measures: Acceptability and feasibility of the trial, intervention and of measurements required to assess outcomes in a definitive trial., Results: An assessment of the questionnaire completion rates indicated teachers would be most appropriate to complete the primary outcome measure. 2 outcome measures: the Social Responsiveness Scale (SRS)-2 and a goal-based measure showed both the highest levels of completion rates (above 80%) at the primary follow-up point (6 weeks postintervention) and captured relevant social and behaviour outcomes. Power calculations were based on these 2 outcome measures leading to a total proposed sample size of 180 participant groups., Conclusions: Results suggest that a future trial would be feasible to conduct and could inform the policy and practice of using Social Stories in mainstream schools., Trial Registration Number: ISRCTN96286707; Results., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/)

Objectives: Although a growing number of older people are dying in care homes, palliative care has developed in these settings only recently. Cross-country representative comparative research hardly exists in this area. As part of a large EU-funded project, we aim to undertake representative comparative research in care homes in Europe, to describe and compare 6 countries in terms of (1) resident outcomes, quality and costs of palliative and end-of-life care; and (2) palliative care structures and staff knowledge and attitudes toward palliative care. We also aim to explore country, facility, staff, patient, and care characteristics related to better outcomes at resident level., Design and Methods: To obtain a representative nationwide sample, we will conduct a large-scale cross-sectional study of deceased residents in care homes in Belgium, Finland, Italy, the Netherlands, Poland, and the United Kingdom, using proportional stratified random sampling (taking into account region, facility type and bed capacity). In each country, all participating care homes retrospectively report all deaths of residents in and outside the facilities over the previous 3-month period. For each case, structured questionnaires, including validated instruments, are sent to (1) the administrator/manager, (2) staff member most involved in care, (3) treating physician (general practitioner or elderly care physician), and (4) a closely involved relative. It is estimated that, per country, 50 care homes are needed on average to obtain a minimum of 200 deceased residents. Collected data include clinical and sociodemographic characteristics, quality of dying, quality and costs of palliative care and end-of-life care, and palliative care structures at the facility level and country level. To obtain a representative view of staff knowledge and attitudes regarding palliative care, PACE will conduct a cross-sectional study of staff working in the participating care homes., Conclusion: Considering the growing challenges associated with aging in all European countries, there is an urgent need to build a robust international comparative evidence base that can inform the development of policies to target improved palliative care in care homes. By describing this research protocol, we hope to inform international research in care homes on how to perform representative end-of-life care research in these settings and better understand which systems are associated with better outcomes., (Copyright © 2016 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.)

Background: A Social Story™ (Carol Gray) is a child-friendly intervention that is used to give children with autism spectrum disorders (ASDs) social information in situations where they have social difficulties. Limited evidence mainly using single-case designs suggests that they can reduce anxiety and challenging behaviour., Objectives: The objectives were to conduct a systematic review, use this to develop a manualised intervention and run a feasibility trial to inform a fully powered randomised controlled trial (RCT) on their clinical effectiveness and cost-effectiveness in schools., Design: This is a three-stage study following the Medical Research Council framework for complex interventions. Specifically, it involved a theoretical phase, a qualitative stage and a feasibility trial stage., Setting: Qualitative interviews and focus groups took place in Child and Adolescent Mental Health Service and primary care settings. The feasibility study took place in 37 local mainstream schools., Participants: Fifty children (aged 5-15 years) in mainstream school settings with a diagnosis of ASD were entered into the trial. For each child, an associated teacher and parent was also recruited., Interventions: The intervention was a goal-setting session followed by a manualised toolkit (including a training session) for creating Social Stories™ for use with school-aged children. The comparator treatment was a goal-setting session followed by an attention control. Both arms received treatment as usual., Main Outcome Measures: Outcomes tested as part of the feasibility study included child- and proxy-completed questionnaires for mental health, quality of life and goal-based outcome measures. Adults additionally completed behaviour diaries and the parental stress index., Results: The review found that the research into social stories is predominantly based in the USA, carried out in under-12-year-olds and using single-case designs. Most studies either did not follow established Social Story criteria or did not report if they did. The assessment of effectiveness presents a largely positive picture but is limited by methodological issues. There were no adequate RCTs and insufficient information to assess a number of important sources of potential bias in most studies. A manualised intervention was produced using an iterative process between user focus groups and a writing team, and assessed in the feasibility study. All 50 participant groups were recruited within the study time frame. Two outcome measures, the Social Responsiveness Scale-2 and the custom-made goal-based measure, showed high levels of completion rates and appeared to be capturing social and behaviour skills targeted by the use of Social Stories. Detailed recommendations for a full trial are provided., Limitations: Blinding of participants was not feasible. Treatment fidelity was not assessed because of low levels of story return rates., Conclusions: The study showed that a fully powered RCT is feasible with an extended geographical footprint. A large amount of data and information has helped to inform the design of this RCT, which will be the subject of a future research grant application. Future work could focus on developing an appropriate blinded outcome measure for this population., Study Registration: This study is registered as PROSPERO CRD42011001440., Trial Registration: Current Controlled Trials ISRCTN96286707., Funding: This project was funded by the NIHR Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 20, No. 6. See the NIHR Journals Library website for further project information.