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3: Ongoing dilemmas and new approaches in palliative care and end of life care research: methods, ethics, and patient and public involvement in the United Kingdom
Get PDFIn this chapter we outline some of the key debates related to methods, ethics, and patient and public involvement in palliative and end of life care (PEoLC) research. With a focus on experiences in the United Kingdom, we reflect on the challenges of how we define and recognise PEoLC needs, and the implications of this for research. Trends and patterns in PEoLC research over recent years are outlined, and methodological challenges are discussed. Ethical issues are at the forefront of PEoLC research, and these are considered alongside the value of patient and public involvement in addressing ethical and methodological concerns. Interdisciplinary and participatory methods underpin effective research that allows us to understand what is happening, why, and in what circumstances, in order to inform future practice and policy. Further research must address how we cross disciplinary and institutional boundaries and break down the barriers to doing so
Recovery and rehabilitation in mental health: Historical perspectives
No full textRecovery and rehabilitation are highly charged terms in contemporary mental health, with their meanings and implications contested by professionals and survivors alike. A loose ‘recovery movement’ with radical reformist aims, which emerged across Britain and the United States in the later decades of the 20th century, has, some argue, been co-opted by ‘neoliberal’ political and clinical interests. Most of these narratives begin with the emergence of the recovery movement as a result of service-user/peer activism in the 1970s: few consider the longer history of ideas and practices of recovery and rehabilitation. In turn, recovery and rehabilitation have been strangely marginal in the works of historians of psychiatry, madness, and mental health. This article traces some of the key literatures and concepts in relation to recovery and rehabilitation, and introduces this special issue of History of the Human Sciences, with contributions on Britain and the United States from the late 19th century to the turn of the 21st century
Disabled People's Lived Experiences of Access to Justice in the Criminal Justice System in the UK
No full textThis chapter summarises the existing evidence on how disabled people experience the (criminal) justice system in the UK. It becomes apparent that the criminal justice system, including its legal and rules-based norms, appears difficult to navigate for people with learning difficulties, mental health conditions and autism. There are unique communication barriers faced by deaf people at all points in the system, from contacting the police, giving evidence, or appearing in court, to prisons. There is little research concerning the experience of people with physical impairments and none reporting on the experiences of those with visual impairments. Researchers tend to focus on the experiences of single impairment groups and often in specific settings, resulting in a compartmentalised and scattered body of knowledge, which cannot effectively capture the extent of disabling barriers and solutions in creating an inclusive justice system. More studies report on the experiences of males than females. Considerations about other intersecting aspects of identity are mostly absent. The evidence is biased towards exposing barriers. This may lead to the conclusion that legal obligations are often not met, but more research is needed to expose areas of greatest need, as well as pockets of good practice and solutions that work across the sector
Characterization of the Gas-Bearing Tight Paleozoic Sandstone Reservoirs of the Risha Field, Jordan: Inferences on Reservoir Quality and Productivity
Get PDFThis study presents the petrographical and petrophysical characteristics of the Cambro-Ordovician clastic reservoirs from the Risha field, northeastern Jordan. Routine core analysis, wireline logs, petrographic thin sections, scanning electron microscopy, and X-ray diffraction were integrated to characterize the gas reservoirs of the Risha, Dubeidib, and Umm Sahm formations (the equivalent of Sarah, Qasim, and Upper Saq formations of northern Saudi Arabia). These reservoirs are variably micro- and mesoporous, with permeability 10% corresponding to 20% clay-coating coverage corresponds to a lower quartz overgrowth ( 5%). Locally sutured grain contacts and stylolites are observed which indicate intense chemical compaction. The feldspar grains are observed to be partially dissolved, which generated minor secondary porosity. Micropore-dominated pore systems and rare secondary macroporosity are typically isolated by abundant cement and/or pore throats choked by clay minerals
Mapping functions for the PHQ-9 and GAD-7 to generate EQ-5D-3L for economic evaluation
Get PDFPurpose
Generic preferenced-based measures, such as EQ-5D-3L, that are used to estimate quality adjusted life years (QALYs) for economic evaluation are not always available in clinical trials. Predicting EQ-5D-3L values from the commonly used Patient Health Questionnaire 9 (PHQ-9) and Generalised Anxiety Disorder-7 (GAD-7) would allow estimation of QALYs from such trials. The aim was to provide mapping functions to estimate EQ-5D-3L from PHQ-9 and GAD-7 to facilitate economic evaluation.
Methods
Data was drawn from four trials of patients with symptoms of depression testing collaborative care or computerised cognitive behavioural therapy. Patients completed PHQ-9, GAD-7, and EQ-5D-3L at different timepoints. Mapping was undertaken using adjusted limited dependent variable mixture models (ALDVMM), ordinary least squares (OLS), and Tobit models based on PHQ-9, GAD-7 scores or questions, and age to predict EQ-5D-3L utilities. Models were selected based on mean error (ME), mean absolute error (MAE), root mean squared error (RMSE), model goodness of fit, and visual inspection of the predictions.
Results
There were 5583 and 3942 observations for EQ-5D-3L combined with PHQ-9 and GAD-7 respectively. ALDVMM models had low ME ( ≤|0.0018|) and MAE ranging from 0.189 to 0.192, while RMSE was from 0.251 to 0.254 and had better predictions than OLS and Tobit models. ALDVMM models with four components based on PHQ-9 and GAD-7 scores are recommended for estimating EQ-5D-3L utilities.
Conclusions
Recommended mapping functions provide users with an approach to estimate EQ-5D-3L utilities for economic evaluation using PHQ-9, GAD-7, or both scores where they have been used together
OpenSAFELY: The impact of COVID‐19 on azathioprine, leflunomide and methotrexate monitoring, and factors associated with change in monitoring rate
Get PDFAims
The COVID-19 pandemic created unprecedented pressure on healthcare services. This study investigates whether disease-modifying antirheumatic drug (DMARD) safety monitoring was affected during the COVID-19 pandemic.
Methods
A population-based cohort study was conducted using the OpenSAFELY platform to access electronic health record data from 24.2 million patients registered at general practices using TPP's SystmOne software. Patients were included for further analysis if prescribed azathioprine, leflunomide or methotrexate between November 2019 and July 2022. Outcomes were assessed as monthly trends and variation between various sociodemographic and clinical groups for adherence with standard safety monitoring recommendations.
Results
An acute increase in the rate of missed monitoring occurred across the study population (+12.4 percentage points) when lockdown measures were implemented in March 2020. This increase was more pronounced for some patient groups (70–79 year-olds: +13.7 percentage points; females: +12.8 percentage points), regions (North West: +17.0 percentage points), medications (leflunomide: +20.7 percentage points) and monitoring tests (blood pressure: +24.5 percentage points). Missed monitoring rates decreased substantially for all groups by July 2022. Consistent differences were observed in overall missed monitoring rates between several groups throughout the study.
Conclusion
DMARD monitoring rates temporarily deteriorated during the COVID-19 pandemic. Deterioration coincided with the onset of lockdown measures, with monitoring rates recovering rapidly as lockdown measures were eased. Differences observed in monitoring rates between medications, tests, regions and patient groups highlight opportunities to tackle potential inequalities in the provision or uptake of monitoring services. Further research should evaluate the causes of the differences identified between groups
“I’ve absolutely reached rock bottom and have no energy”: the lived experience of unemployed and underemployed autistic adults
No full textBackground:
Autistic adults are underrepresented in the employment market, and those in work are commonly underemployed. Our study aimed to gain an understanding of autistic adults’ experiences of unemployment and underemployment.
Methods:
Eight autistic adults who self-identified as currently unemployed or underemployed who were actively seeking to change their employment status participated in semi-structured interviews, analysed using Interpretative Phenomenological Analysis (IPA).
Results:
Four group experiential themes were identified: ‘Feeling paralysed’ (The past weighs heavy; Fragile self-confidence); ‘Powerlessness’ (Lack of agency; Systemic support failures); ‘Negative perceptions’ (Feeling misunderstood; Fear of judgement; Pressure to meet societal expectations) and ‘Recognising our needs’ (Managing mental health difficulties; Importance of self-understanding). Participants felt paralysed by employment experiences which impacted their confidence to progress with their career aspirations. Autistic people felt misunderstood, judged, and powerless within support systems which had implications for their mental health. Participants recognised the importance of managing their mental health needs during times of unemployment and underemployment via self-care and seeking psychological support.
Conclusion:
Putting resource into understanding, acknowledging, and addressing processes within and around employment should be priorities for policy makers if they are serious about improving support to help autistic people find and stay in work
Outbound Profit Shifting and the Propensity to Engage in Cross-Border Acquisitions
Get PDFAccountability-avoiding foreign direct investment (FDI) is a category of financial motives explaining where firms invest and how, yet our grasp of this phenomenon is incomplete. In contrast with tax-haven FDI, where multinational enterprises (MNEs) invest in a host country to pursue inbound profit shifting, we consider a novel motive – FDI attracted by low host country financial transparency that enables outbound profit shifting (OPS). Cross-border acquisitions (CBAs) are a takeover route to achieving OPS and global tax optimization. Our empirical context is 39,951 CBAs by 315 acquirers from 26 countries in the 1996–2015 period. We hypothesize and empirically show a positive relationship between OPS and CBAs and the probability that equity ownership of CBAs will be high. We find that the relationship between OPS and CBAs is stronger the more attractive or income unequal the host market, or when the multinational's industry is vertically or horizontally integrated. We attribute the lack of support for our hypothesis that MNEs require in-house capability to conduct OPS to tax planning consultancies’ services. These findings highlight the role of low financial transparency as a novel locational determinant of OPS-pursuing FDI and emphasize the distinction between inbound and outbound profit shifting as manifestations of accountability-avoiding FDI
Financial advice and household financial portfolios*
Get PDFWe explore the demand for financial advice and the role of such advice in shaping household financial portfolios. Since taking financial advice may not be randomly allocated among households, understanding the drivers behind receiving financial advice is important before exploring the role of financial advice in shaping the composition of household portfolios. A number of specification tests are undertaken, including exploring the sensitivity of the results to selection as well matching estimation techniques. The analysis reveals that financial advice is inversely (positively) associated with the share of wealth held in real estate (bonds and stocks)
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