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Long term care facilities in England during the COVID-19 pandemic—a scoping review of guidelines, policy and recommendations
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.
Journal Article
Older people, information-giving and active agency practices in health, social care and housing: theory, evidence and reflections
That older people should be consumers and active agents has dominated policy discourse across health, social care and housing that has a core care function. This discourse has some established and long-standing critics, such as Gilleard and Higgs, and yet the central question(s) a consumerist discourse raises remains surprisingly relevant today. The purpose of this forum article is to reconsider the viability of active agency amongst older people in the context of empirical research on information-giving across health, social care and housing that has been published since the paper by Gilleard and Higgs in 1998. Information-giving is the key consumer choice mechanism, and yet research is currently located in separate literatures. Giving these separate fields some coherence engages with and provides important empirical commentary. There is little or no evidence that information alone triggers active agency for older people in regard to their health, social care or housing. However, there is consistent evidence that discussion, deliberation and dialogue – or the practices associated with Habermas’ theory of communicative action – are desirable to older people in the context of active agency. More research is needed to demonstrate efficacy beyond communicative approaches being desirable.
Journal Article
Making outcome measures matter: Why should “what matters to people living with dementia” matter to dementia researchers?
This article provides an overview of evidence to support a call to action for dementia researchers to ensure that “what matters to people living with dementia” should be at the heart of any decision‐making around the choices and design of outcome measures. There have been sufficient reviews observing how the outcome measures that have been used in previous research have not been those that have been valued by people living with dementia or their carers. If researchers continue to use existing measures that are not valued by people living with dementia, they will waste limited research resources by using measures that are not sufficiently sensitive to detect changes that might be attributed to interventions. It is time for researchers to collaborate internationally to ensure that resources are invested in designing and validating new approaches for measurement of psychosocial outcomes for those living with dementia. Highlights Outcome measures that have been used in previous research have not been those that have been valued by people living with dementia or their carers. Existing outcome measures have been shown not to be fit for purpose and tend to focus on symptom reduction or broad conceptualizations of quality of life. Dementia researchers will need to collaborate internationally to ensure that resources are invested in designing and validating new approaches for measurement of psychosocial outcomes for those living with dementia.
Journal Article
Involving people living with dementia in research: an accessible modified Delphi survey for core outcome set development
Background
Recent recommendations promote the inclusion of people living with dementia beyond the role of ‘participant’ to involvement in all areas of the research process. This reflects shifts in dementia studies from ‘research on’ to ‘research with’ people living with the condition. In this paper, we describe the design process and features of a modified Delphi survey devised through consultation with people living with dementia.
Methods
This article focusses on consultation with people living with dementia and care partners to design an accessible Delphi survey to facilitate participation in core outcome set development. We used the COINED model of co-research developed through the ESRC/NIHR Neighbourhoods and Dementia Study to structure consultation on three features of modified Delphi design. Consultation was achieved through 1:1 and group sessions with a total of 28 individuals (18 people living with dementia and seven care partners).
Results
A flexible, responsive and adaptive approach to ongoing consultation with people living with dementia and care partners through 1:1 face-to-face sessions facilitated: (1) the development of a 3-point non-categorical importance scale; (2) the translation of 54 outcome areas into ‘accessible statements’ for a two-round Delphi survey administered to five stakeholder groups (people living with dementia, care partners, health and social care professionals, policy-makers and researchers); and (3) the delivery of a Delphi survey. These features of core outcome set development facilitated the involvement of people living with dementia in study design and as research participants in the data collection phase.
Conclusions
Involvement of people living with dementia as a key stakeholder group is not reflected in studies using Delphi survey methods for core outcome set development. Time, resources, researcher expertise and support, underpinned through targeted funding facilitate meaningful and productive inclusive approaches, now an expectation of dementia research.
Trial registration
The study is registered on the
COMET Initiative
.
Journal Article
Constitutionalism and Legal Change in Myanmar
Myanmar’s Constitution of 2008 was the ‘road map’ for the reform process that began in 2011. Despite extensive criticism of this Constitution for its emphasis on the role of the military, much progress has been made towards constitutional government and law reform. With the election of the opposition NLD to government in the general election of November 2015 and the presidential electoral college election of March 2016, now is the time to consider the Constitution, and prospects and needs for constitutional change as Myanmar moves towards democracy and the rule of law. Much has been made of the Constitution’s rigidity, which is seen as an obstacle to reform and inconsistent with embracing the rule of law, human rights and multi-party democracy, especially with a rapidly transforming state and society. Nonetheless, the Constitution is also seen as having potential to be a very positive force for reform. Many issues now arise for constitutionalism and constitutional change: presidency; federalism and territorial governance; the status of minorities and freedom of religion; civil liberties in what is described as a ‘discipline-flourishing democracy’; the courts, justice and the rule of law; the electoral system; and many more. This book is an attempt to gauge the extent and potential for the entrenchment of constitutionalism in Myanmar in a rapidly changing environment.
eBook
What is important to people living with dementia?: the ‘long-list’ of outcome items in the development of a core outcome set for use in the evaluation of non-pharmacological community-based health and social care interventions
Background
Core outcome sets (COS) prioritise outcomes based on their importance to key stakeholders, reduce reporting bias and increase comparability across studies. The first phase of a COS study is to form a ‘long-list’ of outcomes. Key stakeholders then decide on their importance. COS reporting is described as suboptimal and this first phase is often under-reported. Our objective was to develop a ‘long-list’ of outcome items for non-pharmacological interventions for people with dementia living at home.
Methods
Three iterative phases were conducted. First, people living with dementia, care partners, health and social care professionals, policymakers and researchers (
n
= 55) took part in interviews or focus groups and were asked which outcomes were important. Second, existing dementia trials were identified from the ALOIS database. 248 of 1009 pharmacological studies met the inclusion criteria. Primary and secondary outcomes were extracted from a 50% random sample (
n
= 124) along with eight key reviews/qualitative papers and 38 policy documents. Third, extracted outcome items were translated onto an existing qualitative framework and mapped into domains. The research team removed areas of duplication and refined the ‘long-list’ in eight workshops.
Results
One hundred seventy outcome items were extracted from the qualitative data and literature. The 170 outcome items were consolidated to 54 in four domains (Self-Managing Dementia Symptoms, Quality of Life, Friendly Neighbourhood & Home, Independence).
Conclusions
This paper presents a transparent blueprint for ‘long-list’ development. Though a useful resource in their own right, the 54 outcome items will be distilled further in a modified Delphi survey and consensus meeting to identify core outcomes.
Journal Article
Eliciting initial programme theories for a health research capacity strengthening initiative targeting African universities: A realist synthesis
There is a growing call for theory-driven evaluation approaches to health research capacity strengthening (HRCS) interventions. Specifically, realist evaluation has gained wide attention given its response to the question: How does an intervention work, why, for whom and under what conditions? In realist evaluation, initial programme theories (IPTs) are first elicited before they are tested and refined. This article describes the IPTs of an HRCS programme aimed at strengthening the research capacity of African universities. Using the ‘Developing Excellence in Leadership, Training and Science (DELTAS Africa) programme as a real-world case, the IPTs were drafted through a review of the programme documents and other published literature. Seven programme documents and 32 published papers covering 26 research capacity strengthening initiatives in African universities were reviewed. Different Context, Mechanism and Outcomes (CMO) were extracted and CMO configurations were formulated. Thereafter, the CMO configurations were refined through four interviews with the DELTAS programme designing team. Three transferrable IPTs were elicited. Evidence suggests that, for HRCS interventions to be more effective in strengthening research capacity in African universities, systemic challenges (e.g., lack of funding for health research, ineffective research policy environment and lack of institutional support for research) need to be addressed and the university staff/ researchers empowered, incentivised and motivated. The article underscores the importance of institutional buy-in, effective implementation of research policies (e.g., protected time, research career pathways, gender equality, research ethics and integrity, anti-bullying and anti-harassment, etc.), long-term research funding and equitable research partnerships in fostering a strong research environment and culture. Notably, the article makes a methodological contribution by demonstrating how IPTs can be developed using disparate evidence sources. The IPTs will be tested and refined through a primary realist evaluation, which will further refine the CMOs presented in this article and provide insights into the current HRCS evaluation framework.
Journal Article
Multi-Level, Recursive Law and Development: Singapore’s Legal Role in ASEAN
“Developed” states tend to reflect their own development experience in their dealings with “less developed” states, encouraging replication of their own solutions and processes. This is “recursive” law and development (LAD). This article examines the role of Singapore in LAD processes in the ASEAN region. It finds that Singapore’s LAD efforts are recursive and focused on rule-of-law and governance training, including especially anti-corruption methods. These are conducted not via a special agency, but via co-operation that is multilevel, multidimensional, and untrumpeted. LAD can learn lessons from this approach.
Journal Article
Rab5 Isoforms Orchestrate a “Division of Labor” in the Endocytic Network; Rab5C Modulates Rac-Mediated Cell Motility
Rab5, the prototypical Rab GTPase and master regulator of the endocytic pathway, is encoded as three differentially expressed isoforms, Rab5A, Rab5B and Rab5C. Here, we examined the differential effects of Rab5 isoform silencing on cell motility and report that Rab5C, but neither Rab5A nor Rab5B, is selectively associated with the growth factor-activation of Rac1 and with enhanced cell motility. Initial observations revealed that silencing of Rab5C expression, but neither Rab5A nor Rab5C, led to spindle-shaped cells that displayed reduced formation of membrane ruffles. When subjected to a scratch wound assay, cells depleted of Rab5C, but not Rab5A or Rab5B, demonstrated reduced cell migration. U937 cells depleted of Rab5C also displayed reduced cell motility in a Transwell plate migration assay. To examine activation of Rac, HeLa cells stably expressing GFP-Rac1 were independently depleted of Rab5A, Rab5B or Rab5C and seeded onto coverslips imprinted with a crossbow pattern. 3-D GFP-Rac1 images of micro-patterned cells show that GFP-Rac1 was less localized to the cell periphery in the absence of Rab5C. To confirm the connection between Rab5C and Rac activation, HeLa cells depleted of Rab5 isoforms were starved and then stimulated with EGF. Rac1 pull-down assays revealed that EGF-stimulated Rac1 activity was significantly suppressed in Rab5C-suppressed cells. To determine whether events upstream of Rac activation were affected by Rab5C, we observed that EGF-stimulated Akt phosphorylation was suppressed in cells depleted of Rab5C. Finally, since spatio-temporal assembly/disassembly of adhesion complexes are essential components of cell migration, we examined the effect of Rab5 isoform depletion on the formation of focal adhesion complexes. Rab5C-depleted HeLa cells have significantly fewer focal adhesion foci, in accordance with the lack of persistent lamellipodial protrusions and reduced directional migration. We conclude that Rab5 isoforms selectively oversee the multiple signaling and trafficking events associated with the endocytic network.
Journal Article