From ‘other’ to involved: User involvement in research: An emerging paradigm

This article has been made available through the Brunel Open Access Publishing Fund. Copyright @ 2013 The Author(s). This is an Open Access article. Non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly attributed, cited, and is not altered, transformed, or built upon in any way, is permitted. The moral rights of the named author(s) have been asserted.This article explores the issue of ‘othering’ service users and the role that involving them, particularly in social policy and social work research may play in reducing this. It takes, as its starting point, the concept of ‘social exclusion’, which has developed in Europe and the marginal role that those who have been included in this construct have played in its development and the damaging effects this may have. The article explores service user involvement in research and is itself written from a service user perspective. It pays particular attention to the ideological, practical, theoretical, ethical and methodological issues that such user involvement may raise for research. It examines problems that both research and user involvement may give rise to and also considers developments internationally to involve service users/subjects of research, highlighting some of the possible implications and gains of engaging service user knowledge in research and the need for this to be evaluated

Ethical dilemmas are not simply black and white

This is an Accepted Manuscript of an article published by Taylor & Francis Group in Ethics and Social Practice on 1 July 2008, available online at: http://dx.doi.org/10.1080/17496530801948838.This article aims to highlight some of the ethical issues that arise when social work educators plan to involve service users and carers from black and minority ethnic (BME) communities in the teaching of social work students. Between 2005 and 2007, the authors carried out a two-part project that involved working with service users and carers from BME communities in the area around Liverpool in Britain. The article first discusses the background for this two-part project, highlighting two themes relating to the ethical dilemmas we experienced. The first of these themes concerned conducting a project in a political context based on short and intermittent funding and intransigent bureaucracy. Our second theme concerned how to reconcile bringing together a group of people because they were recognized as having a shared experience while at the same time there were a myriad differences within the group. We then discuss these issues in light of the ethical approach we adopted, based on being open and honest, flexible in a respectful and meaningful way, and on anti-oppressive ethics and shared responsibility.Peer reviewe

Radiocaesium transfer and radiation exposure of frogs in Fukushima Prefecture

The International Commission on Radiological Protection has proposed an environmental assessment framework. This includes ionising radiation exposure assessment for different frog life-stages, but radiocaesium transfer parameters are unavailable. We collate data from the Fukushima Prefecture (contaminated by the Fukushima accident) and estimate radiocaesium concentration ratio (CR ) values for tadpoles and adult frogs, presenting the largest available amphibian CR dataset. In total, 513 adult frogs and 2540 tadpoles were analysed in 62 and 59 composite samples respectively. Results suggest that equilibrium was reached between water and amphibian radiocaesium activity concentrations circa one-year after the accident. Radiocaesium transfer to tadpoles was higher than to adult frogs. Dose rates were estimated for different life-stages and species in both the aquatic and terrestrial environment. Estimated dose rates to adults and tadpoles were typically similar because external exposure dominated for both organisms; frogspawn dose rates were estimated to be orders of magnitude lower than other life-stages. For the two sites assessed, which were outside of the most contaminated areas of the Fukushima Prefecture, estimated dose rates were below those anticipated to present a risk to wildlife populations; it is likely that dose rates in more contaminated areas were in excess of some effects benchmark values

Differences in disease phenotype and severity in SLE across age groups

OBJECTIVES: Significant differences have been reported in disease phenotype and severity of systemic lupus erythematosus (SLE) presenting in different age groups. Most indicate a more severe phenotype in juvenile-onset SLE (JSLE). There have been limited studies in older patients and no large studies looking at SLE across all age groups. METHODS: We assessed the effect of age of onset of SLE on the clinical phenotype by analysing data from two large UK cohorts (the UK JSLE Cohort and the UCLH SLE cohort). RESULTS: A total of 924 individuals were compared (413 JSLE, 511 adult-onset SLE). A female preponderance was present, but less pronounced at either end of the age spectrum. Arthritis was more common with advancing age (93% vs 72%, p < 0.001), whereas renal disease (44% vs 33%, p = 0.001), alopecia (47% vs 23%, p < 0.001) and aphthous ulcerations (39% vs 26%, p = 0.001) were more common in the young. Neuropsychiatric lupus was less common in mature-onset SLE (p < 0.01). JSLE was associated more commonly with thrombocytopenia (21% vs 15%, p = 0.01), haemolytic anaemia (20% vs 3%, p < 0.001), high anti-dsDNA (71% vs 63%, p = 0.009), Sm (22% vs 16%, p = 0.02) and RNP (36% vs 29%, p < 0.04) auto-antibodies. Leucopenia increased with advancing age (p < 0.001). Mortality has been declining over recent decades. However, death rates were substantially higher than the general population. The standardized mortality ratio was 18.3 in JSLE and 3.1 in adult-onset SLE. CONCLUSION: These data from the largest-ever direct comparison of JSLE with adult-onset SLE suggest an aggressive phenotype of disease with a worse outcome in patients with JSLE and emphasizes the importance of careful follow-up in this population

Influence of Enterococci and Thermophilic Starter Bacteria on Cheddar Cheese Flavour

End of Project ReportThis project set out to identify suitable enterococci and thermophilic starter strains which could be added to the cheese during manufacture (as starter adjuncts) with the specific aims of enhancing flavour during ripening as well as facilitating flavour diversity - a trait sought by many commercial Cheddar companies. This project confirmed the potential of thermophilic lactic acid strains to affect flavour when used as starter adjuncts in Cheddar cheese manufacture. Their use can also lead to the development of novel flavours. Many adjunct cultures proposed to-date to enhance Cheddar flavour are composed of strains of lactococcal starter, selected for their flavouring capacity. However, application of such strains in industry would lead to increased probability of phage attack on the primary starter. On the other hand, thermophilic lactic acid strains are phage unrelated to conventional starter and thus would not lead to the introduction of starter specific phage into the cheese plant. A thermophilic strain from the Moorepark collection (DPC 4571) was shown to have major commercial potential as a flavour enhancer.Department of Agriculture, Food and the Marin

Temper outbursts in Lowe syndrome:Characteristics, sequence, environmental context and comparison to Prader–Willi syndrome

Background: There is limited research into the nature and aetiology of temper outbursts in people with intellectual disabilities. In this study, we describe the phenomenology and environmental context of temper outbursts in Lowe syndrome, a rare genetic syndrome in which outbursts are purportedly frequent. Method: A temper outburst interview (TOI) was conducted with caregivers of seventeen individuals with Lowe syndrome to generate an account of the behavioural sequence, common antecedents and consequences of temper outbursts, and to enable comparisons with similar work on Prader–Willi syndrome. Results: Outbursts in Lowe syndrome were frequently triggered by thwarted goaldirected behaviour and were associated with high levels of physical aggression and property destruction. Conclusions: Form and sequence of outbursts showed similarities to Prader–Willi syndrome and to behaviours reported in literature on typically developing children. The results highlight the importance of considering shared aetiology as well as syndrome‐specific pathways in the development of outbursts

Spatial datasets of radionuclide contamination in the Ukrainian Chernobyl Exclusion Zone

The dataset “Spatial datasets of radionuclide contamination in the Ukrainian Chernobyl Exclusion Zone” was developed to enable data collected between May 1986 (immediately after Chernobyl) and 2014 by the Ukrainian Institute of Agricultural Radiology (UIAR) after the Chernobyl accident to be made publicly available. The dataset includes results from comprehensive soil sampling across the Chernobyl Exclusion Zone (CEZ). Analyses include radiocaesium (134Cs and 134Cs) 90Sr, 154Eu and soil property data; plutonium isotope activity concentrations in soil (including distribution in the soil profile); analyses of “hot” (or fuel) particles from the CEZ (data from Poland and across Europe are also included); and results of monitoring in the Ivankov district, a region adjacent to the exclusion zone. The purpose of this paper is to describe the available data and methodology used to obtain them. The data will be valuable to those conducting studies within the CEZ in a number of ways, for instance (i) for helping to perform robust exposure estimates to wildlife, (ii) for predicting comparative activity concentrations of different key radionuclides, (iii) for providing a baseline against which future surveys in the CEZ can be compared, (iv) as a source of information on the behaviour of fuel particles (FPs), (v) for performing retrospective dose assessments and (vi) for assessing natural background dose rates in the CEZ. The CEZ has been proposed as a “radioecological observatory” (i.e. a radioactively contaminated site that will provide a focus for long-term, radioecological collaborative international research). Key to the future success of this concept is open access to data for the CEZ. The data presented here are a first step in this process. The data and supporting documentation are freely available from the Environmental Information Data Centre (EIDC) under the terms and conditions of the Open Government Licence: https://doi.org/10.5285/782ec845-2135-4698-8881-b38823e533bf

COMET strongly supported the development and implementation of medium-term topical research roadmaps consistent with the ALLIANCE Strategic Research Agenda

The ALLIANCE Strategic Research Agenda (SRA) initiated by the STAR Network of Excellence and integrated in the research strategy implemented by the COMET consortium, defines a long-term vision of the needs for, and implementation of, research in radioecology. This reference document, reflecting views from many stakeholders groups and researchers, serves as an input to those responsible for defining EU research call topics through the ALLIANCE SRA statement delivered each year to the EJP-CONCERT (2015–2020). This statement highlights a focused number of priorities for funding. Research in radioecology and related sciences is justified by various drivers, such as policy changes, scientific advances and knowledge gaps, radiological risk perception by the public, and a growing awareness of interconnections between human and ecosystem health. The SRA is being complemented by topical roadmaps that have been initiated by the COMET EC-funded project, with the help and endorsement of the ALLIANCE. The strategy underlying roadmap development is driven by the need for improved mechanistic understanding across radioecology. By meeting this need, we can provide fit-for-purpose human and environmental impact/risk assessments in support of the protection of man and the environment in interaction with society and for the three exposure situations defined by the ICRP (i.e., planned, existing and emergency). Within the framework of the EJP-CONCERT the development of a joint roadmap is under discussion among all the European research platforms and will highlight the major research needs for the whole radiation protection field and how these are likely to be addressed by 2030