78 research outputs found
Let It Out (LIO) study: protocol for a mixed-methods study to optimise the design and assess the feasibility of an online emotional disclosure-based intervention in UK hospices
INTRODUCTION: The current COVID-19 pandemic has forced hospices to look for more ways to support people remotely, including psychological support. Emotional disclosure-based interventions hold potential as a way of providing support remotely. However, evidence of their efficacy in people with terminal illness is mixed. Reviews have highlighted this may be due to interventions not being tailored to the unique needs of this population. In response to this, we are developing Let It Out (LIO), an online, self-guided emotional disclosure-based intervention tailored for people living with terminal illness. AIMS: The primary objective of the study is to optimise the design of the LIO intervention. Secondary objectives include assessing its acceptability and feasibility; exploring potential impact on well-being; identifying potential adverse effects; and informing choice of outcome measures for potential future evaluation. METHODS AND ANALYSIS: A single arm, mixed-methods, multisite, longitudinal study. Up to 40 people living with a terminal illness under the care of hospices in England and Scotland will receive the online LIO intervention. LIO consists of 3, self-guided expression sessions over 2 weeks. The primary outcome measures are (1) a structured feedback form completed by participants after the final expression session; and (2) semi-structured interviews and focus groups with ≤15 patient participants, ≤30 hospice staff and ≤15 informal carers. These quantitative and qualitative data will be triangulated via process evaluation to inform optimisation of the intervention design. Secondary outcome measures include validated measures of physical and psychological health collected at baseline and after the final expression session (immediately, 1, 4 and 8 weeks after); and data on recruitment, retention and fidelity. ETHICS AND DISSEMINATION: The study is approved by the University College London Research Ethics Committee (reference: 15281/002). The findings will be shared through peer-reviewed scientific journals and conferences, and traditional, online and social media platforms
Access to and adequacy of psychological services for adult patients in UK hospices: a national, cross-sectional survey
Abstract Background Providing psychological support to people living with terminal illness is a fundamental part of hospice care. Recent research on delivery of psychological services in hospices in the United Kingdom (UK) on a national level, including inequalities or variation in practice, is limited. A nationwide survey will highlight any differences in provision and in doing so help focus future research and inform best practice both within the UK, and internationally. The specific objectives of this survey are to (1) chart the types of psychological support available to adult patients in hospices in the UK in line with the National Institute for Health and Care Excellence model; (2) explore how services are organised; and (3) gather service perspectives on adequacy of care, and facilitators and barriers to appropriate practice. Methods A cross-sectional online survey emailed to adult hospices in the UK in November–December 2019. One staff member involved in the delivery and/or organisation of psychological support was invited to participate per hospice. Of 193 invited hospices, 116 took part. Results Sixteen percent rated their hospice psychological service as wholly adequate. The majority reported that services can access specialist professionals, but many relied on external referrals. Barriers to best practice included funding and staff capacity; facilitators included clear referral structures, audit and appropriate needs and outcome assessments. Conclusions Access to psychological professionals has improved since the last survey 15 years ago, but the majority of responders felt their overall service was not wholly adequate. Basic emotional support is largely felt to be sufficient, but our results indicate a need for improvements in access to more specialist care. Partnerships with external mental health services may be key. Our findings highlight core facilitators and barriers to providing good psychological care at the end of life that should be considered by services both within the UK and on an international level. </jats:sec
Emotional disclosure as a therapeutic intervention in palliative care: a scoping review protocol
Introduction Emotional disclosure (ED) is a term used
to describe the therapeutic expression of emotion. ED
underlies a variety of therapies aimed at improving
well-being for various populations, including people with
palliative-stage disease and their family carers. Systematic
reviews of ED-based psychotherapy have largely focused
on expressive writing as a way of generating ED. However,
heterogeneity in intervention format and outcome
measures has made it difficult to analyse efficacy. There is
also debate about the mechanisms proposed to explain the
potential effects of ED.
We present a scoping review protocol to develop a
taxonomy of ED-based interventions to identify and
categorise the spectrum of interventions that could
be classified under the umbrella term of ‘emotional
disclosure’ in the palliative care setting. By mapping these
to associated treatment objectives, outcome measures
and explanatory frameworks, the review will inform future
efforts to design and evaluate ED-based therapies in this
population.
Methods and analysis The review will be guided
by Arksey and O’Malley’s five-stage scoping review
framework and Levac’s extension. The following electronic
databases will be searched from database inception:
CENTRAL, the Cumulative Index to Nursing and Allied
Health Literature (CINAHL), PsycINFO, Scopus, Web of
Science and MEDLINE. We will include peer-reviewed
studies and reviews. We will also check grey literature,
including clinical trial registers, conference proceedings
and reference lists, as well as contacting researchers.
Articles will be screened by at least two independent
reviewers and data charted using an extraction form
developed for this review. Results will be analysed
thematically to create a taxonomy of interventions,
outcome measures and theoretical frameworks.
Ethics and dissemination This review does not require
ethical approval as it is a secondary analysis of preexisting,
published data. The results will inform future
research in the development of ED-based interventions
and evaluation of their efficacy in the palliative care
setting. We will disseminate findings through peerreviewed
journals
What are the barriers to care integration for those at the advanced stages of dementia living in care homes in the UK? Health care professional perspective
yesPeople with advanced dementia are frequently bed-bound, doubly incontinent and able to speak only a few words. Many reside in care homes and may often have complex needs requiring efficient and timely response by knowledgeable and compassionate staff. The aim of this study is to improve our understanding of health care professionals’ attitudes and knowledge of the barriers to integrated care for people with advanced dementia. In-depth, interactive interviews conducted with 14 health care professionals including commissioners, care home managers, nurses and health care assistants in the UK. Barriers to care for people with advanced dementia are influenced by governmental and societal factors which contribute to challenging environments in care homes, poor morale amongst care staff and a fragmentation of health and social care at the end of life. Quality of care for people with dementia as they approach death may be improved by developing collaborative networks to foster improved relationships between health and social care services
The factor structure of the Forms of Self-Criticising/Attacking & Self-Reassuring Scale in thirteen distinct populations
There is considerable evidence that self-criticism plays a major role in the vulnerability to and recovery from psychopathology. Methods to measure this process, and its change over time, are therefore important for research in psychopathology and well-being. This study examined the factor structure of a widely used measure, the Forms of Self-Criticising/Attacking & Self-Reassuring Scale in thirteen nonclinical samples (N = 7510) from twelve different countries: Australia (N = 319), Canada (N = 383), Switzerland (N = 230), Israel (N = 476), Italy (N = 389), Japan (N = 264), the Netherlands (N = 360), Portugal (N = 764), Slovakia (N = 1326), Taiwan (N = 417), the United Kingdom 1 (N = 1570), the United Kingdom 2 (N = 883), and USA (N = 331). This study used more advanced analyses than prior reports: a bifactor item-response theory model, a two-tier item-response theory model, and a non-parametric item-response theory (Mokken) scale analysis. Although the original three-factor solution for the FSCRS (distinguishing between Inadequate-Self, Hated-Self, and Reassured-Self) had an acceptable fit, two-tier models, with two general factors (Self-criticism and Self-reassurance) demonstrated the best fit across all samples. This study provides preliminary evidence suggesting that this two-factor structure can be used in a range of nonclinical contexts across countries and cultures. Inadequate-Self and Hated-Self might not by distinct factors in nonclinical samples. Future work may benefit from distinguishing between self-correction versus shame-based self-criticism.Peer reviewe
The Friedmann-Lemaitre-Robertson-Walker Big Bang singularities are well behaved
We show that the Big Bang singularity of the
Friedmann-Lemaitre-Robertson-Walker model does not raise major problems to
General Relativity. We prove a theorem showing that the Einstein equation can
be written in a non-singular form, which allows the extension of the spacetime
before the Big Bang. The physical interpretation of the fields used is
discussed. These results follow from our research on singular semi-Riemannian
geometry and singular General Relativity.Comment: 10 pages, 5 figure
Recommended from our members
Empowering Better End-of-Life Dementia Care (EMBED-Care): A mixed methods protocol to achieve integrated person-centred care across settings
Objectives
Globally, the number of people with dementia who have palliative care needs will increase fourfold over the next 40 years. The Empowering Better End‐of‐Life Dementia Care (EMBED‐Care) Programme aims to deliver a step change in care through a large sequential study, spanning multiple work streams.
Methods
We will use mixed methods across settings where people with dementia live and die: their own homes, care homes, and hospitals. Beginning with policy syntheses and reviews of interventions, we will develop a conceptual framework and underpinning theory of change. We will use linked data sets to explore current service use, care transitions, and inequalities and predict future need for end‐of‐life dementia care. Longitudinal cohort studies of people with dementia (including young onset and prion dementias) and their carers will describe care transitions, quality of life, symptoms, formal and informal care provision, and costs. Data will be synthesised, underpinned by the Knowledge‐to‐Action Implementation Framework, to design a novel complex intervention to support assessment, decision making, and communication between patients, carers, and inter‐professional teams. This will be feasibility and pilot tested in UK settings. Patient and public involvement and engagement, innovative work with artists, policymakers, and third sector organisations are embedded to drive impact. We will build research capacity and develop an international network for excellence in dementia palliative care.
Conclusions
EMBED‐Care will help us understand current and future need, develop novel cost‐effective care innovations, build research capacity, and promote international collaborations in research and practice to ensure people live and die well with dementia
Context, mechanisms and outcomes in end of life care for people with advanced dementia
yesBackground: The majority of people with dementia in the UK die in care homes. The quality of end of life care in
these environments is often suboptimal. The aim of the present study was to explore the context, mechanisms and
outcomes for providing good palliative care to people with advanced dementia residing in UK care homes from
the perspective of health and social care providers.
Method: The design of the study was qualitative which involved purposive sampling of health care professionals to
undertake interactive interviews within a realist framework. Interviews were completed between September 2012
and October 2013 and were thematically analysed and then conceptualised according to context, mechanisms and
outcomes. The settings were private care homes and services provided by the National Health Service including
memory clinics, mental health and commissioning services in London, United Kingdom. The participants included
14 health and social care professionals including health care assistants, care home managers, commissioners for
older adults’ services and nursing staff.
Results: Good palliative care for people with advanced dementia is underpinned by the prioritisation of
psychosocial and spiritual care, developing relationships with family carers, addressing physical needs including
symptom management and continuous, integrated care provided by a multidisciplinary team. Contextual factors
that detract from good end of life care included: an emphasis on financial efficiency over person-centred care; a
complex health and social care system, societal and family attitudes towards staff; staff training and experience,
governance and bureaucratisation; complexity of dementia; advance care planning and staff characteristics.
Mechanisms that influence the quality of end of life care include: level of health care professionals’ confidence,
family uncertainty about end of life care, resources for improving end of life care and supporting families, and
uncertainty about whether dementia specific palliative care is required.
Conclusions: Contextual factors regarding the care home environment may be obdurate and tend to negatively
impact on the quality of end of life dementia care. Local level mechanisms may be more amenable to
improvement. However, systemic changes to the care home environment are necessary to promote consistent,
equitable and sustainable high quality end of life dementia care across the UK care home secto
Symptom-led staging for semantic and non-fluent/agrammatic variants of primary progressive aphasia
INTRODUCTION: Here we set out to create a symptom-led staging system for the canonical semantic and non-fluent/agrammatic variants of primary progressive aphasia (PPA), which present unique diagnostic and management challenges not well captured by functional scales developed for Alzheimer's disease and other dementias. METHODS: An international PPA caregiver cohort was surveyed on symptom development under six provisional clinical stages and feedback was analyzed using a mixed-methods sequential explanatory design. RESULTS: Both PPA syndromes were characterized by initial communication dysfunction and non-verbal behavioral changes, with increasing syndromic convergence and functional dependency at later stages. Milestone symptoms were distilled to create a prototypical progression and severity scale of functional impairment: the PPA Progression Planning Aid ("PPA-Squared"). DISCUSSION: This work introduces a symptom-led staging scheme and functional scale for semantic and non-fluent/agrammatic variants of PPA. Our findings have implications for diagnostic and care pathway guidelines, trial design, and personalized prognosis and treatment for PPA. HIGHLIGHTS: We introduce new symptom-led perspectives on primary progressive aphasia (PPA). The focus is on non-fluent/agrammatic (nfvPPA) and semantic (svPPA) variants. Foregrounding of early and non-verbal features of PPA and clinical trajectories is featured. We introduce a symptom-led staging scheme for PPA. We propose a prototype for a functional impairment scale, the PPA Progression Planning Aid
The development of compassionate engagement and action scales for self and others
Background Studies of the value of compassion on physical and mental health and social relationships have proliferated in the last 25 years. Although, there are several conceptualisations and measures of compassion, this study develops three new measures of compassion competencies derived from an evolutionary, motivational approach. The scales assess 1. the compassion we experience for others, 2. the compassion we experience from others, and 3. self-compassion based on a standard definition of compassion as a ‘sensitivity to suffering in self and others with a commitment to try to alleviate and prevent it’. We explored these in relationship to other compassion scales, self-criticism, depression, anxiety, stress and well-being. Methods Participants from three different countries (UK, Portugal and USA) completed a range of scales including compassion for others, self-compassion, self-criticism, shame, depression, anxiety and stress with the newly developed ‘The Compassionate Engagement and Actions’ scale. Results All three scales have good validity. Interestingly, we found that the three orientations of compassion are only moderately correlated to one another (r < .5). We also found that some elements of self-compassion (e.g., being sensitive to, and moved by one’s suffering) have a complex relationship with other attributes of compassion (e.g., empathy), and with depression, anxiety and stress. A path-analysis showed that self-compassion is a significant mediator of the association between self-reassurance and well-being, while self-criticism has a direct effect on depressive symptoms, not mediated by self-compassion. Discussion Compassion evolved from caring motivation and in humans is associated with a range of different socially intelligent competencies. Understanding how these competencies can be inhibited and facilitated is an important research endeavour. These new scales were designed to assess these competencies. Conclusions This is the first study to measure the three orientations of compassion derived from an evolutionary model of caring motivation with specified competencies. Our three new measures of compassion further indicate important complex relationships between different potentiation’s of compassion, well-being, and vulnerability to psychopathologies.N/
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