The personal experience of parenting a child with Juvenile Huntington’s Disease: perceptions across Europe

The study reported here presents a detailed description of what it is like to parent a child with juvenile Huntington’s disease in families across four European countries. Its primary aim was to develop and extend findings from a previous UK study. The study recruited parents from four European countries: Holland, Italy, Poland and Sweden,. A secondary aim was to see the extent to which the findings from the UK study were repeated across Europe and the degree of commonality or divergence across the different countries. Fourteen parents who were the primary caregiver took part in a semistructured interview. These were analyzed using an established qualitative methodology, interpretative phenomenological analysis. Five analytic themes were derived from the analysis: the early signs of something wrong; parental understanding of juvenile Huntington’s disease; living with the disease; other people’s knowledge and understanding; and need for support. These are discussed in light of the considerable convergence between the experiences of families in the United Kingdom and elsewhere in Europe

Quality of life on the views of older family carers of people with dementia

Older family carers of people with dementia represent an increasing but overlooked population of family carers. This research aimed to explore how these individuals make sense of their own quality of life and to identify the factors that enhance or compromise this. Four focus groups were conducted in 2014 with 19 older family carers in community-based support groups in Nottinghamshire, United Kingdom. Data was transcribed verbatim and analysed using Interpretative Phenomenological Analysis. Thirty-three subthemes emerged and were collated into three superordinate themes: 1) aspects of care and caregiving, 2) feelings and concerns, and 3) satisfaction with life and caregiving. This study identified a broad range of aspects that are of particular importance to the QoL of older family carers of people with dementia. These findings are expected to inform future research as well as health and social care providers with the aim of improving life quality for this population

Agricultural climate change mitigation : Carbon calculators as a guide for decision making

This is an Accepted Manuscript of an article published by Taylor & Francis Group in International Journal of Agricultural Sustainability on 9 November 2017, available online: https://doi.org/10.1080/14735903.2017.1398628. Under embargo. Embargo end date: 9 November 2018.The dairy industry is receiving considerable attention in relation to both its significant greenhouse gas (GHG) emissions, and it’s potential for reducing those emissions, contributing towards meeting national targets and driving the industry towards sustainable intensification. However, the extent to which improvements can be made is dependent on the decision making processes of individual producers, so there has been a proliferation of carbon accounting tools seeking to influence those processes. This paper evaluates the suitability of such tools for driving environmental change by influencing on-farm management decisions. Seven tools suitable for the European dairy industry were identified, their characteristics evaluated, and used to process data relating to six scenario farms, emulating process undertaken in real farm management situations. As a result of the range of approaches taken by the tools, there was limited agreement between them as to GHG emissions magnitude, and no consistent pattern as to which tools resulted in the highest/lowest results. Despite this it is argued, that as there was agreement as to the farm activities responsible for the greatest emissions, the more complex tools were still capable of performing a ‘decision support’ role, and guiding management decisions, whilst others could merely focus attention on key issues.Peer reviewe

Private finance for the delivery of school projects in England

This paper analyses the use of the private finance initiative (PFI) approach to deliver school projects in England. The findings are based on case-study research in the Building Schools for the Future scheme (BSF), the largest single capital investment in SO years to rebuild and renew all of England's secondary schools. Up to half of the school infrastructure is to be procured by PFI contracts. A major concern has been the high cost associated with PFI procurement and any subsequent changes to scope. Furthermore, in some cases PFI-funded schools have been closed soon after completion; at great cost to the public sector. The aim of this research was therefore to understand the underlying reasons for these problems. The main conclusion is that the difficulties in BSF arise from not sorting out strategic issues and instituting appropriate organisational frameworks before engaging the private sector. The result of this is a lack of clarity about the long-term needs and end user aspirations. A brief outline of current programme management methods is given and it is suggested that this might be integral to the successful delivery of schools using private finance. A clear strategic vision that cascades into projects via programmes will ensure that the school infrastructure is appropriate for the anticipated strategic benefits and is aligned to the overall service delivery ambitions

Healthier prisons: The role of a prison visitors' centre

Since the inception of the prison as a ‘setting’ for health promotion, there has been a focus on how the health of those men and women who spend ‘time inside’ can at least be maintained and if possible, enhanced, during their prison sentence. This paper presents findings from a mainly qualitative evaluation of a prison visitors' centre in the UK. It reports experiences of prisoners' families, prisoners, prison staff, the local community and the ways in which the visitors' centre has contributed positively to their health and well-being. In addition, key stakeholders were interviewed to ascertain the role this visitors' centre has in policy frameworks related to re-offending. The findings from this evaluation underscore how the visitors' centre improved the quality of visits, and contributed towards the maintenance of family ties through the help and support it provides for families and prisoners. The paper concludes by suggesting that visitors' centres are an essential part of a modern prison service helping to address the government's health inequalities agenda

Comparative population structure of <i>Plasmodium malariae</i> and <i>Plasmodium falciparum</i> under different transmission settings in Malawi

&lt;b&gt;Background:&lt;/b&gt; Described here is the first population genetic study of Plasmodium malariae, the causative agent of quartan malaria. Although not as deadly as Plasmodium falciparum, P. malariae is more common than previously thought, and is frequently in sympatry and co-infection with P. falciparum, making its study increasingly important. This study compares the population parameters of the two species in two districts of Malawi with different malaria transmission patterns - one seasonal, one perennial - to explore the effects of transmission on population structures. &lt;BR/&gt; &lt;b&gt;Methods:&lt;/b&gt; Six species-specific microsatellite markers were used to analyse 257 P. malariae samples and 257 P. falciparum samples matched for age, gender and village of residence. Allele sizes were scored to within 2 bp for each locus and haplotypes were constructed from dominant alleles in multiple infections. Analysis of multiplicity of infection (MOI), population differentiation, clustering of haplotypes and linkage disequilibrium was performed for both species. Regression analyses were used to determine association of MOI measurements with clinical malaria parameters. &lt;BR/&gt; &lt;b&gt;Results:&lt;/b&gt; Multiple-genotype infections within each species were common in both districts, accounting for 86.0% of P. falciparum and 73.2% of P. malariae infections and did not differ significantly with transmission setting. Mean MOI of P. falciparum was increased under perennial transmission compared with seasonal (3.14 vs 2.59, p = 0.008) and was greater in children compared with adults. In contrast, P. malariae mean MOI was similar between transmission settings (2.12 vs 2.11) and there was no difference between children and adults. Population differentiation showed no significant differences between villages or districts for either species. There was no evidence of geographical clustering of haplotypes. Linkage disequilibrium amongst loci was found only for P. falciparum samples from the seasonal transmission setting. &lt;BR/&gt; &lt;b&gt;Conclusions:&lt;/b&gt; The extent of similarity between P. falciparum and P. malariae population structure described by the high level of multiple infection, the lack of significant population differentiation or haplotype clustering and lack of linkage disequilibrium is surprising given the differences in the biological features of these species that suggest a reduced potential for out-crossing and transmission in P. malariae. The absence of a rise in P. malariae MOI with increased transmission or a reduction in MOI with age could be explained by differences in the duration of infection or degree of immunity compared to P. falciparum

Participation in Transition(s):Reconceiving Public Engagements in Energy Transitions as Co-Produced, Emergent and Diverse

This paper brings the transitions literature into conversation with constructivist Science and Technology Studies (STS) perspectives on participation for the first time. In doing so we put forward a conception of public and civil society engagement in sustainability transitions as co-produced, relational, and emergent. Through paying close attention to the ways in which the subjects, objects, and procedural formats of public engagement are constructed through the performance of participatory collectives, our approach offers a framework to open up to and symmetrically compare diverse and interconnected forms of participation that make up wider socio-technical systems. We apply this framework in a comparative analysis of four diverse cases of civil society involvement in UK low carbon energy transitions. This highlights similarities and differences in how these distinct participatory collectives are orchestrated, mediated, and subject to exclusions, as well as their effects in producing particular visions of the issue at stake and implicit models of participation and ‘the public’. In conclusion we reflect on the value of this approach for opening up the politics of societal engagement in transitions, building systemic perspectives of interconnected ‘ecologies of participation’, and better accounting for the emergence, inherent uncertainties, and indeterminacies of all forms of participation in transitions