102 research outputs found

    Psychological support for individuals historically infected with HIV and/or hepatitis C as a result of NHS-supplied blood transfusions and blood products, and for affected families

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    BACKGROUND: Between 1970 and 1991, between 30,000 and 33,000 people in the UK were infected with HIV and/or hepatitis C as a result of treatment with NHS blood and blood products; 2,900 deaths during 1970-2019 are estimated to be attributable to these infections, and people are still dying. The statutory Infected Blood Inquiry, launched in July 2018, has been investigating the circumstances that led to individuals becoming infected and the impacts this has had on them and their families. Among the many issues raised, the Inquiry emphasised the psychosocial impacts and the lack of access to dedicated psychological support for those infected and affected. The England Infected Blood Support Scheme (EIBSS) provides access to a discretionary payment of up to £900 for privately arranged psychological support per year (with the option of ‘further treatment’ funding), which can be accessed upon application. However, uptake of the payment among EIBSS beneficiaries and their family members has been very low, and the reasons for this are unclear. There is lack of robust evidence on the needs for psychological support among those infected and affected by infected blood and blood products. The need for this evidence has become more urgent with the Inquiry concluding in autumn 2023. This study was commissioned to help fill this evidence gap and to inform and consider options for improving the existing offer of psychological support services for infected and affected people. APPROACH We conducted in-depth interviews with 52 infected and affected people and 14 mental health practitioners and experts to understand these needs and explore possible service improvements. Interview participants came from a fairly broad age range and across regions in England, although there were a larger number of women and people identifying as White British than would reflect the UK population. Interviews were conducted between January and May 2023. PRINCIPAL FINDINGS: The infected blood scandal had, and continues to have, a profound impact on the mental health and wellbeing of infected and affected people. Study participants shared multiple accounts of grief and loss, anger, fear and anxiety, guilt, and facing stigma, isolation and discrimination because of infection. About half of the people who participated in the study explicitly said they had experienced trauma, and most described incidents that have caused them significant distress. Additionally, many participants described further long-term ill health linked to the side-effects of their infection(s) and their treatments, which many described as having life-changing impacts on their wellbeing. Affected people also reported very significant impacts of their loved one’s infection on their own wellbeing, including profound emotional and financial consequences of bereavement. Only some of those interviewed for this study had been able to access and use psychological support services for their mental health over the years, and only just over half of the study participants were aware of EIBSS payments for psychological support. Some participants only learnt about the availability of the EIBSS discretionary payment during the research interview. Identified barriers that prevented people from accessing counselling and psychological support included social and personal issues, such as feeling unable to open up, stigma 2 of NHS-supplied blood transfusions and blood products, and for affected families – Final report through encounters with the wider health system; study participants reported instances of discrimination in healthcare settings, which made it even more difficult for people to seek professional help. Only a very small number of people found the EIBSS payment scheme for psychological support easy to work through. Most described this route as requiring substantial effort, and being physically and mentally unwell further exacerbated these experiences. Study participants described feeling burdened by the application process and reported that finding a competent and suitable practitioner was often difficult. There is a substantial need for psychological support in the infected and affected communities, and this need is likely to increase once the Inquiry concludes. Practitioners working with infected and affected people cited instances where the Inquiry had already impeded the progress of clients working towards improving their mental health outcomes. Conclusions Existing psychological support services in England – whether accessed through the NHS or privately – do not currently meet the needs of infected and affected communities. Access to psychological support that is effective and experienced as tailored to an individual’s needs is not common and finding the right match between client and therapist is often down to chance. Accordingly, a future improved psychological support service should: • involve infected and affected people with a range of experiences in the development and design of the psychological support service; • address the substantial distrust in and legacy of EIBSS and the wider health system to provide an effective service; • be offered as standard to all individuals known to be infected or affected, and not just upon application; • be proactive, reaching out to and encouraging individuals to take up support; • be accessible through various routes with self-referral important to empower people and reduce access barriers; • be inclusive and broadened to a wider group of affected people than is currently the case; • be flexible and agile, allowing infected and affected people to access the service when they need it and re-enter it without additional administrative burdens for them; • be compassionate, respectful of its clients and non-judgemental. • be set in a specialist setting, include assessment, and offer individual therapy as well as peer support; • offer a range of therapeutic modalities and delivery modes (in-person, online, telephone); • work with adequately qualified, accredited and registered practitioners who have experience of working with trauma-affected populations, understand long-term health conditions that impact mental health and vice versa, and, importantly, have sensitivity to, and knowledge about the infected blood scandal, and related conditions including but not limited to HIV and hepatitis C. The service should be of high quality, with appropriate mechanisms for oversight and accountability. It should be embedded in a wider support system that is proactive, so that those who face the highest barriers or who are most vulnerable are still able to engage and benefit from this support service. This includes the creation of a single contact point or person (a navigator) who assists individuals to navigate the health and social care system more effectively. A service that ‘does the work’ by proactively reaching out to infected and affected people was seen as an important way in which the government could begin to address the harm it caused

    Introduction to advances in construction and demolition waste

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    Resource efficiency, as well as the importance and limitations of the Circular economy concept, are highlighted. The case of construction and demolition waste-CDW recycling is introduced. The 70% recycling rate for EU in 2020 is analyzed and a literature review on the Waste Framework Directive is carried out. Brief comments on CDW containing hazardous substances are made. A book outline is included

    Do Biofilm Formation and Interactions with Human Cells Explain the Clinical Success of Acinetobacter baumannii?

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    BACKGROUND: The dramatic increase in antibiotic resistance and the recent manifestation in war trauma patients underscore the threat of Acinetobacter baumannii as a nosocomial pathogen. Despite numerous reports documenting its epidemicity, little is known about the pathogenicity of A. baumannii. The aim of this study was to obtain insight into the factors that might explain the clinical success of A. baumannii. METHODOLOGY/PRINCIPAL FINDINGS: We compared biofilm formation, adherence to and inflammatory cytokine induction by human cells for a large panel of well-described strains of A. baumannii and compared these features to that of other, clinically less relevant Acinetobacter species. Results revealed that biofilm formation and adherence to airway epithelial cells varied widely within the various species, but did not differ among the species. However, airway epithelial cells and cultured human macrophages produced significantly less inflammatory cytokines upon exposure to A. baumannii strains than to strains of A. junii, a species infrequently causing infection. CONCLUSION/SIGNIFICANCE: The induction of a weak inflammatory response may provide a clue to the persistence of A. baumannii in patients

    Quality of Longer Term Mental Health Facilities in Europe: Validation of the Quality Indicator for Rehabilitative Care against Service Users’ Views

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    BACKGROUND: The Quality Indicator for Rehabilitative Care (QuIRC) is a staff rated, international toolkit that assesses care in longer term hospital and community based mental health facilities. The QuIRC was developed from review of the international literature, an international Delphi exercise with over 400 service users, practitioners, carers and advocates from ten European countries at different stages of deinstitutionalisation, and review of the care standards in these countries. It can be completed in under an hour by the facility manager and has robust content validity, acceptability and inter-rater reliability. In this study, we investigated the internal validity of the QuIRC. Our aim was to identify the QuIRC domains of care that independently predicted better service user experiences of care. METHOD: At least 20 units providing longer term care for adults with severe mental illness were recruited in each of ten European countries. Service users completed standardised measures of their experiences of care, quality of life, autonomy and the unit's therapeutic milieu. Unit managers completed the QuIRC. Multilevel modelling allowed analysis of associations between service user ratings as dependent variables with unit QuIRC domain ratings as independent variables. RESULTS: 1750/2495 (70%) users and the managers of 213 units from across ten European countries participated. QuIRC ratings were positively associated with service users' autonomy and experiences of care. Associations between QuIRC ratings and service users' ratings of their quality of life and the unit's therapeutic milieu were explained by service user characteristics (age, diagnosis and functioning). A hypothetical 10% increase in QuIRC rating resulted in a clinically meaningful improvement in autonomy. CONCLUSIONS: Ratings of the quality of longer term mental health facilities made by service managers were positively associated with service users' autonomy and experiences of care. Interventions that improve quality of care in these settings may promote service users' autonomy

    Evidence for DNA methylation mediating genetic liability to non-syndromic cleft lip/palate

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    Aim: To determine if nonsyndromic cleft lip with or without cleft palate (nsCL/P) genetic risk variants influence liability to nsCL/P through gene regulation pathways, such as those involving DNA methylation. Materials & methods: nsCL/P genetic summary data and methylation data from four studies were used in conjunction with Mendelian randomization and joint likelihood mapping to investigate potential mediation of nsCL/P genetic variants. Results & conclusion: Evidence was found at VAX1 (10q25.3), LOC146880 (17q23.3) and NTN1 (17p13.1), that liability to nsCL/P and variation in DNA methylation might be driven by the same genetic variant, suggesting that genetic variation at these loci may increase liability to nsCL/P by influencing DNA methylation. Follow-up analyses using different tissues and gene expression data provided further insight into possible biological mechanisms

    Beyond NIMBYs and NOOMBYs:what can wind farm controversies teach us about public involvement in hospital closures?

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    Background Many policymakers, researchers and commentators argue that hospital closures are necessary as health systems adapt to new technological and financial contexts, and as population health needs in developed countries shift. However closures are often unpopular with local communities. Previous research has characterised public opposition as an obstacle to change. Public opposition to the siting of wind farms, often described as NIMBYism (Not In My Back Yard), is a useful comparator issue to the perceived NOOMBYism (Not Out Of My Back Yard) of hospital closure protestors. Discussion The analysis of public attitudes to wind farms has moved from a fairly crude characterisation of the ‘attitude-behaviour gap’ between publics who support the idea of wind energy, but oppose local wind farms, to empirical, often qualitative, studies of public perspectives. These have emphasised the complexity of public attitudes, and revealed some of the ‘rational’ concerns which lie beneath protests. Research has also explored processes of community engagement within the wind farm decision-making process, and the crucial role of trust between communities, authorities, and developers. Summary Drawing on what has been learnt from studies of opposition to wind farms, we suggest a range of questions and approaches to explore public perspectives on hospital closure more thoroughly. Understanding the range of public responses to service change is an important first step in resolving the practical dilemma of effecting health system transformation in a democratic fashion

    The genetic architecture of the human cerebral cortex

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    The cerebral cortex underlies our complex cognitive capabilities, yet little is known about the specific genetic loci that influence human cortical structure. To identify genetic variants that affect cortical structure, we conducted a genome-wide association meta-analysis of brain magnetic resonance imaging data from 51,665 individuals. We analyzed the surface area and average thickness of the whole cortex and 34 regions with known functional specializations. We identified 199 significant loci and found significant enrichment for loci influencing total surface area within regulatory elements that are active during prenatal cortical development, supporting the radial unit hypothesis. Loci that affect regional surface area cluster near genes in Wnt signaling pathways, which influence progenitor expansion and areal identity. Variation in cortical structure is genetically correlated with cognitive function, Parkinson's disease, insomnia, depression, neuroticism, and attention deficit hyperactivity disorder
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