A guide to research with care homes

Purpose - A growing older population with complex care needs, including dementia, are living in care homes. It is important to support researchers in conducting ethical and appropriate work in this complex research environment. The purpose of this paper is to discuss key issues in care homes research including examples of best practice. The intention is to inform researchers across disciplines, leading to more sensitive and meaningful care home research practice. Design/methodology/approach - Experienced care homes researchers were invited to provide methodological insights and details not already reported in their publications. These have been analysed, creating key themes and linked to project publications. Findings - The need for reflexivity was a key finding. In particular, researchers need to: appreciate that the work is complex; see participants as potential research partners; and consider how cognitive and physical frailty of residents, staffing pressures and the unique environments of care homes might impact upon their research. Other challenges include recruitment and consenting people who lack mental capacity. Research limitations/implications - As the care homes research landscape continues to develop and grow, there still remains limited reflection and discussion of methodological issues with a need for a "safe space" for researchers to discuss challenges. Originality/value - This review is an updated methodological guide for care homes researchers, also highlighting current gaps in the mechanisms for continuing to share best research practice

Clinical and cost-effectiveness of the Managing Agitation and Raising Quality of Life (MARQUE) intervention for agitation in people with dementia in care homes: a single-blind, cluster-randomised controlled trial

BACKGROUND: Many people with dementia living in care homes have distressing and costly agitation symptoms. Interventions should be efficacious, scalable, and feasible. METHODS: We did a parallel-group, cluster-randomised controlled trial in 20 care homes across England. Care homes were eligible if they had 17 residents or more with dementia, agreed to mandatory training for all eligible staff and the implementation of plans, and more than 60% of eligible staff agreed to participate. Staff were eligible if they worked during the day providing face-to-face care for residents with dementia. Residents were eligible if they had a known dementia diagnosis or scored positive on screening with the Noticeable Problems Checklist. A statistician independent of the study randomised care homes (1:1) to the Managing Agitation and Raising Quality of Life (MARQUE) intervention or treatment as usual (TAU) using computer-generated randomisation in blocks of two, stratified by type of home (residential or nursing). Care home staff were not masked to the intervention but were asked not to inform assessors. Residents with dementia, family carers, outcome assessors, statisticians, and health economists were masked to allocation until the data were analysed. MARQUE is an evidence-based manualised intervention, delivered by supervised graduate psychologists to staff in six interactive sessions. The primary outcome was agitation score at 8 months, measured using the Cohen-Mansfield Agitation Inventory (CMAI). Analysis of the primary outcome was done in the modified intention-to-treat population, which included all randomly assigned residents for whom CMAI data was available at 8 months. Mortality was assessed in all randomly assigned residents. This study is registered with the ISRCTN registry, number ISRCTN96745365. FINDINGS: Between June 14, 2016, and July 4, 2017, we randomised ten care homes (189 residents) to the MARQUE intervention and ten care homes (215 residents) to TAU. At 8 months, primary outcome data were available for 155 residents in the MARQUE group and 163 residents in the TAU group. At 8 months, no significant differences in mean CMAI scores were identified between the MARQUE and TAU groups (adjusted difference -0·40 [95% CI -3·89 to 3·09; p=0·8226]). In the intervention care homes, 84% of all eligible staff completed all sessions. The mean difference in cost between the MARQUE and TAU groups was £204 (-215 to 623; p=0·320) and mean difference in quality-adjusted life-years was 0·015 (95% CI -0·004 to 0·034; p=0·127). At 8 months, 27 (14%) of 189 residents in the MARQUE group and 41 (19%) of 215 residents in the TAU group had died. The prescription of antipsychotic drugs was not significantly different between the MARQUE group and the TAU group (odds ratio 0·66; 95% CI 0·26 to 1·69, p=0·3880). INTERPRETATION: The MARQUE intervention was not efficacious for agitation although feasible and cost-effective in terms of quality of life. Addressing agitation in care homes might require resourcing for delivery by professional staff of a more intensive intervention, implementing social and activity times, and a longer time to implement change. FUNDING: UK Economic and Social Research Council and the National Institute of Health Research

Coping with stress: a pilot study of a self-help stress management intervention for patients with epileptic or psychogenic non-epileptic seizures

Purpose: Many patients with epilepsy or psychogenic non-epileptic seizures (PNES) experience high levels of stress. Although psychological interventions have been developed for seizure disorders, few patients can currently access them. We aimed to assess the acceptability and feasibility of a self-help intervention targeting stress in patients with seizures, and to provide preliminary evidence for its effectiveness. Method: Patients were recruited from outpatient neurology clinics and randomised to an immediate intervention group (n=39), who received the intervention at baseline, or a delayed intervention group (n=43), who received the intervention one month post-baseline. Participants completed self-report questionnaires measuring stress (SSSI), anxiety (GAD-7), depression (NDDI-E), quality of life (EQ-5D), seizure severity and frequency (LSSS-3) at baseline, and at one- and two-month follow-up. Participants also provided telephone feedback. The intervention consisted of a self-help stress management workbook based on an integrative stress model framework. Results: Although the rate of participants failing to return follow-up information at two months was approximately 50%, those who completed the trial found the intervention acceptable; with the majority rating it as helpful (63.6%) and that they would recommend it to others with seizures (88.1%). A significant reduction in self-reported stress (p = 0.01) with a medium effect size (dz = 0.51) was observed one-month post-intervention. There were no significant changes in any other measures. Conclusion: The intervention was perceived to be acceptable, safe and helpful by participants. It could be a useful complementary treatment option for reducing stress experienced by patients living with seizure disorders. Further evaluation in a larger trial is warranted

Neuromarketing and consumer neuroscience:contributions to neurology

Background: 'Neuromarketing' is a term that has often been used in the media in recent years. These public discussions have generally centered around potential ethical aspects and the public fear of negative consequences for society in general, and consumers in particular. However, positive contributions to the scientific discourse from developing a biological model that tries to explain context-situated human behavior such as consumption have often been neglected. We argue for a differentiated terminology, naming commercial applications of neuroscientific methods 'neuromarketing' and scientific ones 'consumer neuroscience'. While marketing scholars have eagerly integrated neuroscientific evidence into their theoretical framework, neurology has only recently started to draw its attention to the results of consumer neuroscience.Discussion: In this paper we address key research topics of consumer neuroscience that we think are of interest for neurologists; namely the reward system, trust and ethical issues. We argue that there are overlapping research topics in neurology and consumer neuroscience where both sides can profit from collaboration. Further, neurologists joining the public discussion of ethical issues surrounding neuromarketing and consumer neuroscience could contribute standards and experience gained in clinical research.Summary: We identify the following areas where consumer neuroscience could contribute to the field of neurology:. First, studies using game paradigms could help to gain further insights into the underlying pathophysiology of pathological gambling in Parkinson's disease, frontotemporal dementia, epilepsy, and Huntington's disease.Second, we identify compulsive buying as a common interest in neurology and consumer neuroscience. Paradigms commonly used in consumer neuroscience could be applied to patients suffering from Parkinson's disease and frontotemporal dementia to advance knowledge of this important behavioral symptom.Third, trust research in the medical context lacks empirical behavioral and neuroscientific evidence. Neurologists entering this field of research could profit from the extensive knowledge of the biological foundation of trust that scientists in economically-orientated neurosciences have gained.Fourth, neurologists could contribute significantly to the ethical debate about invasive methods in neuromarketing and consumer neuroscience. Further, neurologists should investigate biological and behavioral reactions of neurological patients to marketing and advertising measures, as they could show special consumer vulnerability and be subject to target marketing

OSIRIS and SOMBRERO Inertial Fusion Power Plant Designs, Volume 2: Designs, Assessments, and Comparisons

This is a comprehensive design study of two Inertial Fusion Energy (IFE) electric power plants. Conceptual designs are presented for a fusion reactor (called Osiris) using an induction-linac heavy-ion beam driver, and another (called SOMBRERO) using a KrF laser driver. The designs covered all aspects of IFE power plants, including the chambers, heat transport and power conversion systems, balance-of-plant facilities, target fabrication, target injection and tracking, as well as the heavy-ion and KrF drivers. The point designs were assessed and compared in terms of their environmental & safety aspects, reliability and availability, economics, and technology development needs

Management of exceptions on access control policies

Peer-reviewedThe use of languages based on positive or negative expressiveness is very common for the deployment of security policies (i.e., deployment of permissions and prohibitions on firewalls through single-handed positive or negative condition attributes). Although these languages may allow us to specify any policy, the single use of positive or negative statements alone leads to complex configurations when excluding some specific cases of general rules that should always apply. In this paper we survey such a management and study existing solutions, such as ordering of rules and segmentation of condition attributes, in order to settle this lack of expressiveness

OSIRIS and SOMBRERO Inertial Fusion Power Plant Designs, Volume 1: Executive Summary & Overview

This is a comprehensive design study of two Inertial Fusion Energy (IFE) electric power plants. Conceptual designs are presented for a fusion reactor (called Osiris) using an induction-linac heavy-ion beam driver, and another (called SOMBRERO) using a KrF laser driver. The designs covered all aspects of IFE power plants, including the chambers, heat transport and power conversion systems, balance-of-plant facilities, target fabrication, target injection and tracking, as well as the heavy-ion and KrF drivers. The point designs were assessed and compared in terms of their environmental & safety aspects, reliability and availability economics, and technology development needs

Use of the Compulsive Exercise Test With Athletes: Norms and Links With Eating Psychopathology

This study assessed the 5-factor structure of the Compulsive Exercise Test (CET) and explored the relationship between compulsive exercise and eating psychopathology in athletes. Confirmatory and exploratory factor analyses of the CET were conducted with 689 competitive athletes (18–35 years of age). Convergent validity with the Eating Disorders Examination Questionnaire (EDE-Q) was explored. The 5-factor structure showed a poor fit; an alternative 3-factor structure is proposed. Exercising for weight control and exercising to avoid a negative mood were strongly associated with eating psychopathology. Implications for using the CET with athletes are discussed