The global COVID-19 pandemic is likely to have a major impact on the experience of death, dying, and bereavement. This study aimed to review and synthesize learning from previous literature focused ...on the impact on grief and bereavement during other infectious disease outbreaks. We conducted a rapid scoping review according to the principles of the Joanna Briggs Institute and analyzed qualitative data using thematic synthesis. From the 218 identified articles, 6 were included in the analysis. They were four qualitative studies, one observational study, and a systematic review. Studies were conducted in West Africa, Haiti, and Singapore. No research studies have focused on outcomes and support for bereaved people during a pandemic. Studies have tended to focus on survivors who are those who had the illness and recovered, recognizing that some of these individuals will also be bereaved people. Previous pandemics appear to cause multiple losses both directly related to death itself and also in terms of disruption to social norms, rituals, and mourning practices. This affects the ability for an individual to connect with the deceased both before and after the death, potentially increasing the risk of complicated grief. In view of the limited research, specific learning from the current COVID-19 crisis and the impact on the bereaved would be pertinent. Current focus should include innovative ways to promote connection and adapt rituals while maintaining respect. Strong leadership and coordination between different bereavement organisations is essential to providing successful postbereavement support.
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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UILJ, UL, UM, UPCLJ, UPUK, ZAGLJ, ZRSKP
Abstract
This article focuses on what are termed “practical interpretations”—that is, constitutional interpretations given by the executive or legislative branch. It does so principally in relation ...to constitutional conventions in Westminster-type systems, which are normally not subject to judicial review. The argument is that these practical interpretations are of great significance, and more attention needs to be paid to them and to understanding how they are made, as they are at least equally important as judicial interpretations, in spite of expanding judicial review of conventions. In order to establish how nonjudicial interpretation operates, the discussion goes beyond the United Kingdom to consider how certain conventions, when transplanted elsewhere, receive very different interpretations. In the course of making this argument, the article explores the constitutional importance of practical interpretation, examining in the process the extent of judicial review of conventions.
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.
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.
Abstract
Background and Objectives
It is questionable whether existing outcome measurement instruments (OMIs) in dementia research reflect what key stakeholders’ value. We attained consensus from ...more than 300 key stakeholders, including people living with dementia, and identified 13 core outcome items for use in nonpharmacological and community-based interventions for people with dementia living at home. In this systematic review, we review OMIs that have previously been used in dementia care research to determine how, or even if, the 13 core outcome items can be measured.
Research Design and Methods
We extracted self-reported OMIs from trials, reviews, and reports of instrument development. Searches were undertaken in the ALOIS database, MEDLINE, PsycINFO, CINAHL, SocINDEX, and COSMIN databases. We aimed to assess the psychometric properties of OMI items for face validity with the core outcome items, content validity, internal consistency, and responsiveness. We held a coresearch workshop involving people living with dementia and care partners in order to ratify the findings.
Results
In total 347 OMIs were located from 354 sources. Of these, 76 OMIs met the inclusion criteria. No OMIs were deemed to have sufficient face validity for the core outcome set (COS) items, and no OMIs proceeded to further assessment. The “best” available OMI is the Engagement and Independence in Dementia Questionnaire.
Discussion and Implications
This study provides a practical resource for those designing dementia research trials. Being able to measure the COS items would herald a paradigm shift for dementia research, be responsive to what key stakeholders value and enhance the ability to make comparisons.
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.
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.
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.
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.
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.
Abstract
Objectives
inconsistency in outcome measurement in dementia care trials impedes the comparisons of effectiveness between trials. The key aim of this study is to establish an agreed ...standardised core outcome set (COS) for use when evaluating non-pharmacological health and social care interventions for people with dementia living at home.
Method
we used a mixed-methods research design, including substantive qualitative research with five key stakeholders groups. We consulted with people living with dementia for many aspects of this research. We applied a modified two-round 54 item Delphi approach to attain consensus on core outcomes. The COS was finalised in a face-to-face consensus meeting in 2018.
Results
of the 288 who completed round 1 (21 people living with dementia, 58 care partners, 137 relevant health and social care professionals, 60 researchers, 12 policy makers), 246 completed round 2 (85% response rate). Twenty participants attended the consensus meeting. We reached consensus for the inclusion of 13 outcome items.
Conclusion
we identified 13 outcome items which are considered core; many relate to social health. Providing there are adequate measures, measuring these core outcome items will enhance comparisons for effectiveness making trial evidence more useful. The items will provide commissioners and service planners with information on what types of interventions are most likely to be valued highly by people living with dementia.
Trial registration
The study is registered on the COMET initiative database.
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.
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).
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.
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.
The study is registered on the COMET Initiative .
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IZUM, KILJ, NUK, PILJ, PNG, SAZU, UL, UM, UPUK
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.
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.
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).
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.
“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.
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