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Factors influencing physical healthcare quality for people with intellectual disability: the psychiatry multidisciplinary team perspective
Get PDFBackground There is a need for better collaborative care between services to improve healthcare provision for people with intellectual disabilities (ID). In the UK, the learning disabilities (LD) psychiatry multidisciplinary team (MDT) is a specialist team responsible for providing and coordinating care for people with lD. The aim of this study was to document LD MDT perspectives on factors influencing healthcare quality for people with ID. Method Healthcare professionals who were members of MDTs within a National Health Service Trust in the West Midlands were purposively sampled for interview (n=11). Participants included psychiatrists, nurses, occupational therapists and speech and language therapists. Data were analysed thematically using Braun and Clarke’s six stage approach. Results Factors influencing the quality of healthcare provision included: the LD MDT working to overcome systemic barriers, the consequences of specific failures within mainstream healthcare services such as diagnostic overshadowing, inadequate use of information collated in health passports, and inadequate capacity assessments of people with ID. Improvements in healthcare provision for people with ID require better accessibility to healthcare and better training for healthcare professionals so they can understand the health needs of people with ID. Conclusion A rapid review of practices around health passports for people with ID should be conducted. Healthcare professionals working in mainstream healthcare services need an increased awareness of the harms of diagnostic overshadowing and inadequate capacity assessments. Conclusions are based on findings from MDTs within one health board; future work may focus on understanding perspectives from different teams
“It's like going through life at a mediocre level”: A qualitative study of the meaning and impact of fatigue in children and young people with sickle cell disease
Get PDFBackground: Fatigue is increasingly recognised as a prevalent and debilitating symptom for children and young people (CYP) with long-term conditions (LTCs), significantly affecting their family, social and educational participation. In sickle cell disease (SCD), fatigue is the most frequently reported symptom, surpassing pain related to vaso-occlusion. However, understanding of fatigue’s nature and impact on CYP with SCD remains limited. This qualitative study explores the meaning and consequences of fatigue for CYP with SCD to inform services, treatments and care.Methods: This exploratory research interviewed 12 CYP with SCD aged 12-23 years, five parents and ten healthcare professionals across England. Participants were recruited through convenience sampling from an NHS Trust, SCD-focused charities and social media. Data were generated using audio-recorded online semi-structured or art-elicitation interviews. Interviews were transcribed and analysed using coding, constant comparison and thematic categorisation to identify key themes. Results: Six thematic categories were constructed from the data: (1) constant state of reduced energy, (2) the daily struggle, (3) the invisibility of fatigue, (4) being socially isolated, (5) managing fatigue, and (6) the future while negotiating fatigue. SCD fatigue was seen as a persistent, inescapable daily struggle, with reduced energy for day-to-day activities. This was often unnoticed or misunderstood by others. It hindered YP's daily routines, caused frequent school absences, reduced social participation, and promoted social exclusion. To meet social expectations and avoid stigma, CYP described constantly pushing themselves to conceal their fatigue, exacerbating their difficulties with SCD. Fatigue was invisible in clinical settings, leading to a lack of standardised/formalised support and increasing uncertainties and precarity about the future. CYP and parents employed energy economisation and recharging strategies to cope with and control fatigue.Conclusions: Fatigue dominates CYP’s experience of living with SCD, significantly impacting their physical, social and educational functioning and leading to isolation and stigma. Often overlooked in clinical settings, addressing fatigue should be integral to SCD care and research. This includes incorporating fatigue assessments, developing targeted self-management programmes, and furthering research on its management. The findings emphasise recognising fatigue as a primary symptom in CYP with LTCs, given its severe impact on social and educational development and future stability
The Trade Imbalance Network and Currency Returns
Get PDFWe introduce in the theory of Gabaix and Maggiori (2015) a network structure to capture the complexity of the balance sheets of financial intermediaries, using the Leontief inverse-based centrality. We use this framework in a multi-country world with imperfect financial markets to study how currency risk premia are connected to financiers' risk bearing capacity. Guided by the theory, we construct a Centrality Based Characteristic (CBC), based on the centrality of the trade imbalance network and variance-covariance matrix of currency returns. Sorting currencies on CBC generates a high Sharpe ratio, and the resulting excess returns reflect a novel source of predictability
Euclid: I. Overview of the Euclid mission
Get PDFThe current standard model of cosmology successfully describes a variety of measurements, but the nature of its main ingredients, dark matter and dark energy, remains unknown. Euclid is a medium-class mission in the Cosmic Vision 2015–2025 programme of the European Space Agency (ESA) that will provide high-resolution optical imaging, as well as near-infrared imaging and spectroscopy, over about 14 000 deg2 of extragalactic sky. In addition to accurate weak lensing and clustering measurements that probe structure formation over half of the age of the Universe, its primary probes for cosmology, these exquisite data will enable a wide range of science. This paper provides a high-level overview of the mission, summarising the survey characteristics, the various data-processing steps, and data products. We also highlight the main science objectives and expected performance
Effectiveness of peer support for people with severe mental health conditions in high-, middle- and low-income countries: multicentre randomised controlled trial
Get PDFBackgroundSome trials have evaluated peer support for people with mental ill-health in high-income, mainly English-speaking countries, but the quality of the evidence is weak.AimsWe investigated the effectiveness of UPSIDES peer support in high-, middle- and low-income countries.MethodThis pragmatic multi-centre parallel-group wait-list randomised controlled trial with three measurement points (baseline, 4 and 8 months) took place at six study sites: two in Germany, and one each in Uganda, Tanzania, Israel, and India. Participants were adults with long-standing severe mental health conditions. Outcomes were improvements in social inclusion (primary), empowerment, hope, recovery, and health and social functioning (secondary). Participants allocated to the intervention group were offered UPSIDES peer support.ResultsOf the 615 participants (305 intervention group), 337 (54.8%) identified as women. Average age was 38.3 (SD=11.2) years and mean illness duration was 14.9 (SD=38.4) years. Those allocated to the intervention group received 6.9 (SD=4.2) peer support sessions on average. Intention-to treat analysis showed effects on two of the three subscales of the Social Inclusion Scale, Empowerment Scale, and Hope Scale. Per-protocol analysis with participants who had received three or more intervention sessions also showed an effect on the Social Inclusion Scale total score (β=0.18, p=0.031, 95% CI=0.02-0.34).ConclusionsPeer support beneficially impacts on social inclusion, empowerment and hope of people with severe mental health conditions across diverse settings. As social isolation is a key driver of mental ill-health, and empowerment and hope are both crucial for recovery, peer support can be recommended as an effective component of mental health care. Peer support has the potential to move global mental health closer toward a recovery- and rights-based orientation.Trial registration: ISRCTN26008944
Preparing pharmacists for disaster management and practice: protocol for a scoping review with a participatory approach
Get PDFIntroduction Emergency humanitarian situations can be caused by extreme weather events, natural disasters, civil conflicts, international wars, terrorism and pandemics, which threaten our health and compromise health systems worldwide. Pharmacists are the third-largest healthcare professional group globally and provide pharmaceutical care and advice to people in need. However, the training opportunities to prepare pharmacists to respond in emergency humanitarian areas are not well described and may be limited. This scoping review aims to understand the extent and type of evidence in relation to training and education activities to prepare future pharmacists for disaster management in humanitarian emergency situations.Methods and analysis We will analyse peer-reviewed literature relating to educational or training activities for pharmacists/pharmacy students in the delivery of pharmacy services in humanitarian emergency situations. Relevant medical subject headings and keywords will be used to search Ovid MEDLINE, Scopus, EMBASE, ERIC, Informit, Web of Science and CINAHL databases from inception to the end of July 2024. Hand searching of any key references identified will also be performed. The title and abstract of search results will be screened to identify articles eligible to be included for full review. Articles meeting the inclusion criteria will undergo data extraction, content analysis and synthesis of the evidence using NVivo qualitative analysis software. A narrative summary of key themes and concepts in the literature will be presented as results. An international panel of experts will be consulted to inform decision-making processes during the development and interpretation stages, and we propose a template for the incorporation of participatory/consultative methodology into the scoping review process.Ethics and dissemination Ethics approval is not required for this study protocol because the members of the expert panel consulted are researchers who are participating based on their professional skills. Findings will be disseminated via publication in a peer-reviewed journal and presentation at international conferences
Exploring the spatial composition of UK social housing
Get PDFThis paper explores the potentials and challenges of organising in (and at times against-and-beyond) social housing. Drawing on extended research across the UK with a range of tenants, activists, and housing staff we illustrate the need for fine-grained and spatially attuned analysis. In particular we adopt an autonomist Marxist ‘spatial composition analysis’, arguing that this approach is ideally placed to examine social housing struggles. We show how although changes to social housing are grounded in accumulation and control, immanent to these shifts can be conditions for resistance. Insights from campaigns – both successful and otherwise – emphasise the need for collective, bottom-up inquiry in order to develop properly spatially-attuned analysis. We also consider the complexities that emerge when trying to build solidarity between social housing tenants and workers, with staff occupying ambivalent positions both in-and-against and in-and-for wider, often-racialised structures. Ultimately social housing struggles can be powerful and transformative, but one size does not fit all. By emphasising both the theoretical and practical value of a spatial composition analysis we argue that autonomist Marxist ideas can play a powerful role in housing studies and struggles
Emotions associated with the intention to purchase sustainable food: An assessment within and between different animal-sourced food categories
Get PDFThis study investigates the role of emotions in predicting sustainable food purchase intentions. A national representative sample from Norway (N = 785) was randomly assigned to rate their emotional response to specific food categories: livestock, capture fishery, aquaculture, and hunting. Emotional responses to each food category were of moderate intensity but there were no significant differences between specific animal-sourced foods. Findings from a series of regression analyses showed that egoistic values positively predict the intensity of positive and negative emotions for all food categories. Additionally, it was shown that individual differences in biospheric values (when strong) and hedonic values (when weak) predicted stronger negative emotions. Further analysis showed that negative emotions are the most consistent predictor of willingness to pay for sustainable animal-sourced food. These findings suggest that negative emotions can potentially be leveraged to enhance sustainable animal-sourced food consumption intentions
FAIR African brain data: challenges and opportunities
Get PDFIntroduction: The effectiveness of research and innovation often relies on the diversity or heterogeneity of datasets that are Findable, Accessible, Interoperable and Reusable (FAIR). However, the global landscape of brain data is yet to achieve desired levels of diversity that can facilitate generalisable outputs. Brain datasets from low-and middle-income countries of Africa are still missing in the global open science ecosystem. This can mean that decades of brain research and innovation may not be generalisable to populations in Africa.Methods: This research combined experiential learning or experiential research with a survey questionnaire. The experiential research involved deriving insights from direct, hands-on experiences of collecting African Brain data in view of making it FAIR. This was a critical process of action, reflection, and learning from doing data collection. A questionnaire was then used to validate the findings from the experiential research and provide wider contexts for these findings.Results: The experiential research revealed major challenges to FAIR African brain data that can be categorised as socio-cultural, economic, technical, ethical and legal challenges. It also highlighted opportunities for growth that include capacity development, development of technical infrastructure, funding as well as policy and regulatory changes. The questionnaire then showed that the wider African neuroscience community believes that these challenges can be ranked in order of priority as follows: Technical, economic, socio-cultural and ethical and legal challenges.Conclusion: We conclude that African researchers need to work together as a community to address these challenges in a way to maximise efforts and to build a thriving FAIR brain data ecosystem that is socially acceptable, ethically responsible, technically robust and legally compliant
Climate change, decent work and workers’ health in Brazil: theoretical considerations
Get PDFThis paper explores the theoretical and conceptual nexus between climate change, workers’ health, decent work, human rights, and the UN Sustainable Development Goals (SDGs) using the case of agricultural workers in Brazil. It posits the overall relationships between climate change risks and working conditions, relevant international legal standards and norms on worker rights, and the features of worker conditions in Brazilian agriculture. It offers a compelling research agenda with five operational pillars: (1) research, (2) surveillance and monitoring, (3) risk assessment, (4) risk management, and (5) policies and regulations. The holistic framework it develops avoids monocausal explanations, incomplete solutions, fragmented interventions, and unintended consequences, which impact the livelihoods and health of Brazilian agricultural workers. The paper concludes by highlighting that through research using a human rights perspective, Brazil can protect workers' health in the face of climate change
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