bluuebunny/crossref_metadata_2025 huggingface dataset:
Direct and Indirect Evidence Suggests Continuous Presence of Viral Hemorrhagic Septicemia Virus (Genotype IVb) in Budd Lake, Michigan: Management Implications
Authors: Throckmorton Elizabeth , Peters Amber , Brenden Travis , Faisal Mohamed
Published: May 2015

In May 2007, viral hemorrhagic septicemia virus genotype IVb (VHSV IVb) was isolated from several fish species in Budd Lake, a 71-ha inland lake in central Michigan. Because of the virulence and pathogenicity of VHSV IVb, follow-up testing was conducted between 2007 and 2010. This testing found no further evidence of VHSV IVb presence. Similar patterns (i.e., initial mortality events followed by no evidence of additional infections) have been observed in other waterbodies, which leads to questions regarding the implications that these patterns could have for fisheries management (e.g., could stocking naive fish lead to additional epizootic occurrences?). This study was conducted to determine whether VHSV IVb was still present in Budd Lake by intensively sampling across multiple seasons, locations, and size-groups of Muskellunge Esox masquinongy, Northern Pike Esox lucius, and Largemouth Bass Micropterus salmoides. Individuals were tested for both active VHSV IVb infection and antibody production. We found that VHSV IVb was still present in Budd Lake, as active infections were detected from samples in spring, summer, and fall 2011, with highest infection prevalence in spring 2011. Spring 2011 infection prevalence was 17% for esocids and 33% for Largemouth Bass. Between 74% and 80% of collected esocids produced antibodies, depending on the sampling season. Antibody production in Largemouth Bass ranged from 12% in spring and fall 2011 to 20% in spring 2012. Based on these results, we recommend sustained vigilance in the management of VHSV IVb–positive systems to limit the risk of virus spread as it is perhaps questionable whether systems that have experienced an outbreak will ever be virus-free.

Received September 16, 2014; accepted February 7, 2015
Larval performance and oviposition habitat selection of the tree frog, Hyla savignyi, in response to conspecific larval density
Authors: Stein Meital , Blaustein Leon
Published: May 2015

Amphibians breeding in temporary pools may experience strong intraspecific density-dependent effects in the form of larval competition and oviposition site selection. These potential effects are untested for the tree frog,Hyla savignyi,an anuran species of conservation concern in Israel. We conducted an outdoor mesocosm experiment to examine how intraspecific larval density may affect larval performance and oviposition habitat selection inH. savignyi. We added ecologically relevant densities of 0, 10, or 40 early-stage tadpoles into mesocosms (plastic tubs) containing 20 L of water. Each density was replicated with four tubs. Time to and size at metamorphosis were not significantly affected by initialH. savignyidensity. However, strong intraspecific competitive effects were observed in the form of reduced size at metamorphosis at the high density. We also found that gravidH. savignyifemales reduce future intraspecific competition for their progeny by choosing to oviposit in mesocosms with no, or low, densities ofH. savignyitadpoles. Thus, intraspecific competition in this anuran species appears to be an important factor at ecologically relevant densities; larval competition increases with increasing densities and may be avoided by gravid females assessing breeding habitat quality in the form of conspecific tadpole density or mass.
The effect of entrepreneurial context on the performance of new ventures
Authors: Lin Song , Rogoff Edward G. , Foo Check-Teck , Liu Xiaoyuan
Published: May 2015

Purpose

– This empirical study aims to test the impact of four types of entrepreneurial context on the growth and success rates of new ventures in China and related the findings to the theory and practice of entrepreneurship dating back 2,500 years to ancient China.

Design/methodology/approach

– After describing the business guidelines given by Fan Li, an entrepreneurial merchant selling Chinese medicines in ancient times, a conceptual framework was extracted as the basis for a discussion of the relationship between entrepreneurial context and entrepreneurial activity. Entrepreneurial context was conceptualized as being composed of family, social, business and institutional components. Five hypotheses about the influence of these different context variables on entrepreneurial activities were developed. From data compiled from the sampling of 239 business entrepreneurs in Beijing, a hierarchical regression was formed and the hypotheses tested.

Findings

– The impact of entrepreneurial context on entrepreneurial activity can be divided into two layers, internal factors (e.g. family context) which are similar to “yin” (?) in the traditional Chinese philosophy while external factors (e.g. business, social and institutional contexts) were like “yang” (?). The two factors play different roles in entrepreneurial activities, while different contexts mediate and moderate each other in complex ways.

Research limitations/implications

– Research limitations pertain to the size and locale of the sample. A larger sample that involved subjects from different regions would facilitate a wider understanding of the effects of entrepreneurial context upon the entrepreneurial process.

Originality/value

– The theory of entrepreneurial context is in its beginning stages, and the paper completed a systematic study of entrepreneurial context through theoretical model building using large-sample empirical research. In addition, the paper is the first ever to relate the theory and practice of entrepreneurship back 2,500 years. Through a multi-research methodology, the study clearly shows the critical importance of integrating Chinese history into the development of management theory.
Unraveling legitimation strategies of Chinese Internet start-ups
Authors: Su Xiaohua , Peng Haidong , Zhang Shujun , Rong Yun
Published: May 2015

Purpose

– The purpose of this paper is to explore the legitimacy needs and legitimation strategies of Internet start-ups in the context of industry dynamism.

Design/methodology/approach

– The purpose of this paper is to explore the legitimacy needs and legitimation strategies of Internet start-ups in the context of industry dynamism.

Findings

– The authors found that Internet start-ups are in great need of acquiring market and relational legitimacy at their nascent stages. Conformance to the environment is widely adopted by them as a legitimacy-enhancing strategy. There is an inverted “U” relationship between the maturity of the industry and the proactivity of any legitimation strategy in the sector. In the face of high- and low-level industry maturity, start-ups tend to employ prudent strategies to build up legitimacy. While in medium-mature industries, ventures are more likely to adopt proactive and aggressive strategies.

Research limitations/implications

– Due to the very nature of case methodology, this study is based on a small number of observations and it is set in the context of the Internet industry. The generalizability of its findings needs to be reinforced by further concrete studies.

Practical implications

– This paper suggests that industry dynamism should be taken into account carefully when implementing a choice of legitimation strategies.

Originality/value

– This study makes an attempt to further our understanding of how industry dynamism influences firms’ choices of legitimation strategies.
Service quality framework for clinical laboratories
Authors: Ramessur Vinaysing , Hurreeram Dinesh Kumar , Maistry Kaylasson
Published: May 2015

Purpose

– The purpose of this paper is to illustrate a service quality framework that enhances service delivery in clinical laboratories by gauging medical practitioner satisfaction and by providing avenues for continuous improvement.

Design/methodology/approach

– The case study method has been used for conducting the exploratory study, with focus on the Mauritian public clinical laboratory. A structured questionnaire based on the SERVQUAL service quality model was used for data collection, analysis and for the development of the service quality framework.

Findings

– The study confirms the pertinence of the following service quality dimensions within the context of clinical laboratories: tangibility, reliability, responsiveness, turnaround time, technology, test reports, communication and laboratory staff attitude and behaviour.

Practical implications

– The service quality framework developed, termed LabSERV, is vital for clinical laboratories in the search for improving service delivery to medical practitioners.

Originality/value

– This is a pioneering work carried out in the clinical laboratory sector in Mauritius. Medical practitioner expectations and perceptions have been simultaneously considered to generate a novel service quality framework for clinical laboratories.
An improvement project within urological care
Authors: Khatami Annelie , Rosengren Kristina
Published: May 2015

Purpose

– The purpose of this paper is to describe staff experiences in an on-going improvement project regarding patients with ureteral stones.

Design/methodology/approach

– A qualitative descriptive study based on eight group interviews and 48 narratives, was performed. Data were analysed using qualitative content analysis. Trustworthiness was ensured by using a well-documented improvement process method during six months.

Findings

– The results formed three categories: an absent comprehensive view; complexity; and vulnerability within the organisation. A holistic perspective regarding urological care at the micro-, meso- and macro-levels is needed to improve planning and caring processes.

Research limitations/implications

– This study includes one team (six members, different health professionals) within the same urology department.

Practical implications

– Results show that staff need information, such as guidelines and support throughout the improvement work to deliver high-quality care. Moreover, there is a need for evidence-based guidelines at national level to support improvement work.

Social implications

– Healthcare staff need to pay attention to all team member needs to improve urological care. Organisational and managerial aspect are needed to support clear and common goals regarding healthcare improvement work.

Originality/value

– Urological improvement projects, generally, are lacking, which is why this study is important to improve nephrolithiasis patient care.
Sustainability: orthopaedic surgery wait time management strategies
Authors: Amar Claudia , Pomey Marie-Pascale , SanMartin Claudia , De Coster Carolyn , Noseworthy Tom
Published: May 2015

Purpose

– The purpose of this paper is to examine Canadian organizational and systemic factors that made it possible to keep wait times within federally established limits for at least 18 months.

Design/methodology/approach

– The research design is a multiple cases study. The paper selected three cases: Case 1 – staff were able to maintain compliance with requirements for more than 18 months; Case 2 – staff were able to meet requirements for 18 months, but unable to sustain this level; Case 3 – staff were never able to meet the requirements. For each case the authors interviewed persons involved in the strategies and collected documents. The paper analysed systemic and organizational-level factors; including governance and leadership, culture, resources, methods and tools.

Findings

– Findings indicate that the hospital that was able to maintain compliance with the wait time requirements had specific characteristics: an exclusive mandate to do only hip and knee replacement surgery; motivated staff who were not distracted by other concerns; and a strong team spirit.

Originality/value

– The authors’ research highlights an important gradient between three cases regarding the factors that sustain waiting times. The paper show that the hospital factory model seems attractive in a super-specialized surgery context. However, patients are selected for simple surgeries, without complications, and so this cannot be considered a unique model.
Use of copula functions for the reliability of series systems
Authors: Achcar Jorge Alberto , Moala Fernando Antonio
Published: May 2015

Purpose

– The purpose of this paper is to provide a new method to estimate the reliability of series system by using copula functions. This problem is of great interest in industrial and engineering applications.

Design/methodology/approach

– The authors introduce copula functions and consider a Bayesian analysis for the proposed models with application to the simulated data.

Findings

– The use of copula functions for modeling the bivariate distribution could be a good alternative to estimate the reliability of a two components series system. From the results of this study, the authors observe that they get accurate Bayesian inferences for the reliability function considering large samples sizes. The Bayesian parametric models proposed also allow the assessment of system reliability for multicomponent systems simultaneously.

Originality/value

– Usually, the studies of systems reliability engineering assume independence among the component lifetimes. In the approach the authors consider a dependence structure. Using standard classical inference methods based on asymptotical normality of the maximum likelihood estimators for the parameters the authors could have great computational difficulties and possibly, not accurate inference results, which there is not found in the approach.
Maintenance management models: a study of the published literature to identify empirical evidence
Authors: Fraser Kym , Hvolby Hans-Henrik , Tseng Tzu-Liang (Bill)
Published: May 2015

Purpose

– Maintenance and its management has moved from being considered a “necessary evil” to being of strategic importance for most competitive organisations around the world. In terms of the identification and use of organisational-wide maintenance management models the picture is not clears from both a literature and practical perspective. The purpose of this paper is to shed light on the various models and their use in real-world applications, and in doing so, explores the gap between academic research and practice.

Design/methodology/approach

– For this paper two comprehensive reviews of the literature were undertaken, first, to identify and categorise the various maintenance management models, and second, to determine the depth of empirical evidence for the popular models in real-world applications. Descriptive analysis of both the practical examples and empirical evidence rates (EER) for maintenance related journals is provided.

Findings

– Within the literature 37 maintenance management models were identified and categorised. From these, three models were found to be popular: total productive maintenance (TPM), condition based maintenance, and reliability centred maintenance. While several thousand papers discussed these three models, only 82 articles were found to provide empirical evidence.

Research limitations/implications

– While providing a sound foundation for future research the outcomes are based solely on academic literature. Analysis of EER outside the field of maintenance is needed to make comparisons.

Practical implications

– The paper offers practitioners a detailed contemporary overview of maintenance management models along with tabulated results of practical examples to present day organisations. Such practical-focused papers are very limited within academic literature.

Social implications

– With EER as low as 1.5 per cent for some journals this paper acts as a reminder to researchers that they have an obligation to society to spend taxpayer funded research on addressing social needs and real-world problems.

Originality/value

– This paper makes a concerted attempt to link academic research with management and operational practitioners. While the paper is critical of the current academic imbalance between theory and practice, a number of suggestions to improve EER are offered in the conclusions.
Impact of ICTs on leadership practices: representations and actions
Authors: Leduc Sylvain , Guilbert Laure , Vallery Gérard
Published: May 2015

Purpose

– The purpose of this paper is to present the results of field research carried out within a civil army corps responsible for the security of people and property.

Design/methodology/approach

– The study deals with e-leadership as it leadership practices related to information and communication technologies (ICTs).

Findings

– Having initially described the position of ICTs in current workplace contexts, the authors review the question of the role of leadership as well as that of knowledge acquired in e-leadership.

Practical implications

– The results reveal variations in the use of ICTs in leadership situations, which find their origins in multiple determinisms related to the types of task, the technological tools and the constraints inherent to customary situations.

Originality/value

– These conclusions are discussed in the light of research centered on the predictive variables arising from the adoption of technologies in the context of the workplace.
Evaluating implementation of strategic performance management practices in universities in Uganda
Authors: Karuhanga Bernadette Nambi
Published: May 2015

Purpose

– The purpose of this study was to propose a tool for evaluating implementation of strategic performance management (PM) by examining the strategic PM practices in public universities in Uganda.

Design/methodology/approach

– Literature was reviewed and the general features of PM practices were identified. These were captured in a survey instrument which was later administered to staff in selected universities in Uganda to determine the extent of strategic PM implementation. Principal component analysis was conducted to cluster similar variables together with an aim of identifying the focal areas for determining the extent of strategic PM practices implementation in a university.

Findings

– Strategic PM in public universities in Uganda exists and is aimed at achieving quality. Despite its existence, respondents generally disagreed that: an effective PM system exists in their respective universities, PM training is continuously provided to managers and staff and a formal process exists for units to provide feedback on the attainment of goals. Findings further revealed that implementation of PM practices in universities could be evaluated based on five foci, namely, alignment of organisational vision, mission, strategy and individual performance goals; staff involvement in PM implementation at unit level; existence of an improvement plan; existence of a performance evaluation plan; and staff awareness and understanding of PM.

Research limitations/implications

– The study focussed on only public universities in Uganda; hence, another study could be conducted considering all universities, both private and public. The list of items from literature may not be exhaustive hence additional PM practices that were not included in this tool should be identified from literature to enrich the evaluation tool.

Practical implications

– This study allowed the development of an empirical list of PM practices which could be used by universities and policy makers to evaluate implementation of strategic PM. Hence, the five foci could be adopted as an evaluation tool for universities with regard to strategic PM implementation. Using these five foci, university managers can identify the grey areas in their PM systems to which management attention could be focussed for improvement.

Originality/value

– Despite the increasing desire for effective PM implementation in most organisations the world over, there exists no empirical evidence of institutional PM implementation in public universities in Uganda. Besides, to the best of my knowledge, no study has been previously conducted with the aim of developing a tool for evaluating strategic (PM implementation in universities in Uganda.
Family with Legius syndrome (neurofibromatosis type 1‐like syndrome)
Authors: Sakai Noriyasu , Maeda Tatsuro , Kawakami Hiroshi , Uchiyama Masaki , Harada Kazutoshi , Tsuboi Ryoji , Mitsuhashi Yoshihiko
Published: May 2015

Legius syndrome (Online Mendelian Inheritance in Man no. 611431) or neurofibromatosis type 1 (NF1)‐like syndrome was first reported by Legius et al. in 2007. We herein report the first instance of Legius syndrome occurring in two female siblings in Japan. Both individuals presented cafe‐au‐lait macules and freckling. Mutation analysis revealed a mutation of c.349C>T resulting in p.Arg117* in the SPRED1 gene as the cause of the Legius syndrome. The National Institutes of Health criteria for NF1 are insufficient to rule out the condition. For this reason, and because the clinical course of each condition is quite different, we stress the need to differentiate Legius syndrome from NF1 clearly.
Locomotion during digestion changes current estimates of seed dispersal kernels by fish
Authors: van Leeuwen Casper H. A. , Beukeboom Rosanne , Nolet Bart A. , Bakker Elisabeth S. , Pollux Bart J.A.
Published: May 2015

Dispersal of seeds by animals is an important mechanism regulating plant diversity, range expansions and invasions. Many birds, mammals, fish and reptiles regularly ingest, transport and excrete viable seeds (known as endozoochory).

The effectiveness of endozoochory is modelled in dispersal kernels: functions that describe seed shadows in the landscape by combining movement of animals with experimentally obtained seed retention times and survival.

Currently, dispersal kernels use experimental data from resting animals, yet only moving animals disperse seeds. Although physical activity is known to affect digestive processes, little is known on how and to what extent this may influence current estimates of endozoochory. Activity may either prolong seed retention in the animal's gut (locomotion‐priority mode hypothesis) or may not affect seed excretion rate (digestion‐priority mode hypothesis), and may affect seed survival and germination positively or negatively.

We tested how activity alters dispersal estimates in fish. We compared the seed dispersal potential of two riparian plant species (Carex acuta and Carex riparia) by the common carp (Cyprinus carpio) subjected to three different activity levels: low (basal metabolic rate, BMR), medium (2 × BMR) or high activity (3 × BMR).

Physical activity of the fish did not affect the number of intact retrieved seeds over 15 h of activity, but significantly affected seed retrieval patterns over time for both seed species. More active fish started seed excretion about 1 h later and kept excreting seeds at least 2 h longer. Effects of gut passage on germination could only be tested for C. acuta, where it reduced the percentage of germinating seeds by 22%, independent of the activity level. Seeds ingested by the fish germinated on average 3·5 days later than non‐ingested control seeds. Seed retention times did not affect the timing of germination.

Our results support the locomotion‐priority mode hypothesis and show that modelling dispersal kernels using parameters from inactive fish may underestimate potential dispersal distances. Because a trade‐off between physical activity and digestive physiology is likely common in animals, it should be taken into account in future modelling of endozoochorous seed dispersal kernels.
Inferring the effects of potential dispersal routes on the metacommunity structure of stream insects: as the crow flies, as the fish swims or as the fox runs?
Authors: Kärnä Olli‐Matti , Grönroos Mira , Antikainen Harri , Hjort Jan , Ilmonen Jari , Paasivirta Lauri , Heino Jani
Published: May 2015

Metacommunity research relies largely on proxies for inferring the effect of dispersal on local community structure. Overland and watercourse distances have been typically used as such proxies. A good proxy for dispersal should, however, take into account more complex landscape features that can affect an organism's movement and dispersal. The cost distance approach does just that, allowing determining the path of least resistance across a landscape.

Here, we examined the distance decay of assemblage similarity within a subarctic stream insect metacommunity. We tested whether overland, watercourse and cumulative cost distances performed differently as correlates of dissimilarity in assemblage composition between sites. We also investigated the effect of body size and dispersal mode on metacommunity organization.

We found that dissimilarities in assemblage composition correlated more strongly with environmental than physical distances between sites. Overland and watercourse distances showed similar correlations to assemblage dissimilarity between sites, being sometimes significantly correlated with biological variation of entire insect communities. In metacommunities deconstructed by body size or dispersal mode, contrary to our expectation, passive dispersers showed a slightly stronger correlation than active dispersers to environmental differences between sites, although passive dispersers also showed a stronger correlation than active dispersers to physical distances between sites. The strength of correlation between environmental distance and biological dissimilarity also varied slightly among the body size classes.

After controlling for environmental differences between sites, cumulative cost distances were slightly better correlates of biological dissimilarities than overland or watercourse distances between sites. However, quantitative differences in correlation coefficients were small between different physical distances.

Although environmental differences typically override physical distances as determinants of the composition of stream insect assemblages, correlations between environmental distances and biological dissimilarities are typically rather weak. This undetermined variation may be attributable to dispersal processes, which may be captured using better proxies for the process. We suggest that further modifying the measurement of cost distances may be a fruitful avenue, especially if complemented by more direct natural history information on insect dispersal behaviour and distances travelled by them.
The burden of being exemplary: national sentiments, awkward witnessing, and womanhood in occupied Palestine
Authors: Segal Lotte Buch
Published: May 2015

This paper offers an analysis of how Palestinian wives of detainees are made into examples, both by themselves and by the people they are intimate with, whilst considering also the context of these women's awkward place in Palestinian narratives of national becoming. The main objective is to examine the burden of being an example, and what that implies for those who aspire to or are subtly coerced into inhabiting the position of an ‘exemplary’ woman in Palestine. Particular modalities of being an example are expected from Palestinian wives of detainees in order to sustain a shared version of the ordinary under military occupation. Not surprisingly, the emotional labour it takes to appear exemplary is necessarily eliminated from public as well as intimate registers of speech in order to keep up the collective aspiration to maintain a so‐called ‘ordinary life’ during ongoing conflict.
Revolution is the way you eat: exemplification among left radical activists in Denmark and in anthropology
Authors: Krøijer Stine
Published: May 2015

In anthropology, examples have always been an integral part of the investigation of the social life of people. Sometimes they simply work as a poor illustration of an author's general or existing theoretical ideas, but on other occasions they are conducive to setting new thoughts in motion. This paper explores the role of the example among left radical activists in the context of the Climate Summit (COP 15) protests in Copenhagen and a trip to forage for discarded food in a supermarket container in order to feed activists. I argue that examples make up a theory of change that evades problematic distinctions between the particular and universal, and set new actions in motion on a horizontal plane without relying on a predefined plan or end‐point. The paper points to the ways this may inform the use of examples within the anthropological discipline.
Paradoxical paradigms: moral reasoning, inspiration, and problems of knowing among Orthodox Christian monastics
Authors: Forbess Alice
Published: May 2015

Whilst anthropological discussions of morality tend to be rooted in Aristotelian ethical theory, this paper highlights an alternative Christian moral reasoning rooted in Neoplatonist/Christian hybrids and visible in contemporary Eastern Orthodox monastic practice. The analytical move proposed here is to focus on the disjunctures between different ethical traditions within Christianity in order to show how they produce diverse forms of moral reasoning that rely on particular uses of exemplarity and exemplification. It is argued that the Aristotelian lens, with its stress on compliance, piety, obedience, and the daily practice of self‐perfection, can produce impoverished accounts of ascetic life by excluding the more anarchic and idiosyncratic forms of spiritual training. Christianity has a long tradition of deploying paradox and perplexity to explode facile certainties, thereby carving out a space, at the limits of human knowing, where a divinity conceived as radically alter to the created world can be directly engaged with.
Firm life cycle, corporate risk‐taking and investor sentiment
Authors: Habib Ahsan , Hasan Mostafa Monzur
Published: May 2015

This study investigates the corporate risk‐taking and the performance consequences at different stages of the firm life cycle. We find that risk‐taking is higher in the introduction and decline stages of the life cycle, but lower in the growth and mature stages. We also find that risk‐taking during introduction and decline stage (growth and maturity stage) affects future performance adversely (positively). We also document that managerial risk‐taking propensities increase during periods of high investor sentiment and firms in different life cycle stages respond to sentiment differently. Collectively, these results suggest that the firm life cycle has explanatory power for corporate risk‐taking behaviour.
Making a difference – the impact of the Confidential Inquiry into premature deaths of people with learning disabilities
Authors: Heslop Pauline , Marriott Anna
Published: May 2015

Accessible summary

In our research, we looked at why people with learning disabilities sometimes live shorter lives than other people. We were told about the deaths of 247 people with learning disabilities. We looked at what happened to these people before they died.

We found that the professionals who were supporting these people learnt a lot from our research. This led to some changes in how they support people with learning disabilities.

We have also seen that people are using the findings to improve the care and services for people with learning disabilities in the places they live.

The Department of Health and NHS England are some of the organisations working to make sure doctors and nurses listen to what our research said.

The Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD) was commissioned by the Department of Health in England in 2010 to investigate the avoidable or premature deaths of people with learning disabilities through retrospective reviews of deaths. Both the process of conducting CIPOLD and the findings of the study itself made an impact on the way in which professionals thought about issues relating to people with learning disabilities and led to changes in policy and practice. Much of the impact of CIPOLD came from arming practitioners, family carers, people with learning disabilities and policy makers with the research findings and encouraging them to take on the mantle of change from there, for example, by increasing the provision of training or reviewing their current practice. There were a number of challenges that the research team faced. First, they needed to ensure the assiduous recording of any impact that took place throughout the duration of the research and beyond. Secondly, they were careful to make sure that as far as possible, professionals were involved and that it was a learning experience for them from which they had something to gain. Thirdly, self‐reflexivity on the part of the research team was required in order for them to understand where their own strengths and limitations lay.
Applying the Mental Capacity Act to research with people with learning disabilities
Authors: Jepson Marcus
Published: May 2015

Accessible Summary

People with learning disabilities should be included in research that is about them.

There is a law in England and Wales called the Mental Capacity Act that has rules that researchers must follow.

This paper shows how one researcher used those rules to ensure people with learning disabilities were able to be involved in a research project.

This study describes the experiences of a researcher negotiating consent with people with learning disabilities to become participants in a research study. The study was about how the Mental Capacity Act (MCA) was applied to everyday decision‐making in social care settings. However, before data collection could begin, the researcher had to follow the principles of the MCA and the requirements of ethical research practice. The study reports on the important role of gatekeepers in allowing (or preventing) access to potential participants. However, gatekeepers did not always act in a manner in keeping with the first principle of the MCA. Additionally, the dilemmas for a researcher in assessing participants’ capacity to consent to the study are described, as are three approaches followed which supported people to decide for themselves.
A platform for change?
Authors: Williams Val , Ponting Lisa , Ford Kerrie
Published: May 2015

Accessible summary

The governments in the UK want people with learning disabilities to have a voice about what happens in their own life and also in policy.

One way of doing this is through research. This paper looks at two inclusive research projects, which were about people using direct payments and personal assistants. The projects both employed people with learning disabilities.

Each of these projects made a training pack from the research, so that they would help people with learning disabilities and their supporters. They also had some effects in ways that were not planned, because the government wanted to learn from them about inclusive research.

All research seems to have most effect when there are many voices seeking change, including those of policy makers themselves.

Inclusive research is a way of achieving ‘choice and control’. But just like with direct payments and personal budgets, the best way in these projects was to have good support from other people who will listen to you, and help you decide things for yourself.

Participation, voice and control have long been central concerns in the research at Norah Fry. This paper focuses on inclusive research relating to choice and control, as experienced by people with learning disabilities who use personal budgets and direct payments, and aims to question how the process of inclusive research can be linked to wider outcomes. The paper gives a brief overview of two studies carried out by Norah Fry Research Centre, which were in partnership with self‐advocacy groups and employed people with learning disabilities, between 1999 and 2007. Both in research and in everyday life, we question individual notions of ‘choice and control’, showing how relational autonomy was at the heart, both of the process of the inclusive research and also of the outcomes and findings. However, all social research seems to have greatest impact when there is a ‘bandwagon effect’ of policy and practice initiatives. The discussion considers how the impact of inclusive research designs can be at policy, practice and ‘direct’ user level and is often achieved by people with learning disabilities having a voice at the dissemination stage.
A few steps along the road? Promoting support for parents with learning difficulties
Authors: Tarleton Beth
Published: May 2015

Accessible summary

Parents with learning difficulties often face lots of barriers to being the best parents they can. They often do not have the support they need.

The Norah Fry Research Centre (NFRC) found out how to support parents with learning difficulties. It developed a network to help professionals work with parents with learning difficulties.

Some professionals are working well with parents. Many professionals do not have the time, training or support they need to work with parents in a more positive way.

This paper considers the impact of research and development work around parenting by adults with a learning difficulty undertaken at the Norah Fry Research Centre (NFRC) since 2005. It discusses how our understanding of the support needs of parents with learning difficulties grew through an initial mapping study which led to the concept of ‘Parenting with Support’. It then discusses the development of the Working Together with Parents Network which has endeavoured to continue to draw together and promote positive support for parents with learning difficulties and how the subsequent research at NFRC has been undertaken with a desire to further understand and support the development of this positive practice. It describes how this work has supported professionals already aware of parents with learning difficulties’ support needs and but has yet to engage with the far wider range of professionals and agendas involved in supporting vulnerable families.
A ‘Suitable Person’: an ‘insider’ perspective
Authors: Coles Barbara
Published: May 2015

Accessible Summary

The purpose of this article is to demonstrate how ‘insider’ research can make an effective contribution to policy debates.

It draws on a study which looked at the experiences of twelve parents in England who manage a Direct Payment for an adult child who has a learning disability and complex support needs.

This article matters to people with learning disabilities because it reveals some of the challenges faced by some parents who are managing Direct Payments on their behalf.

This article draws on a doctoral study carried out across seven counties in England which focused on twelve parents’ experiences of carrying out the role of a ‘suitable person’ (‘SP’) by managing a direct payment for an adult child (living in her/his own home) who has severe learning disabilities, autism and very complex support needs. Evidence came from naturally occurring qualitative data using (auto) ethnography. The research exposed how vital these parents’ expertise and skills are to their adult children, but also how they themselves are being used within the care system. This article considers whether research has greater impact if a researcher who has direct experience of the research problem has conducted it. It argues that ‘insider’ research can uncover a unique perspective of some of the issues that directly affect the lives of ‘SP’. In terms of ‘impact’, how seriously such research is taken, especially if the findings run counter to much of the existing literature, as it did in this study, remains to be seen.
Easy Information about research: getting the message out to people with learning disabilities
Authors: Goodwin Julian , Mason Victoria , Williams Val , Townsley Ruth
Published: May 2015

Accessible Summary

People with learning disabilities have a right to be given easy information about research which is about their lives. At the Norah Fry Research Centre, we have tried to do that.

We have employed a person with learning disabilities Julian Goodwin. In this paper, he looks back at the importance of the work he has done.

We think about the questions and difficulties in making information about research ‘easy’. For instance different people with learning disabilities need different types of information.

Easy information is changing, and we need to look forward to better ways of getting research messages out to people with learning disabilities.

This paper discusses the provision of easy information about research to people with learning disabilities, their families and supporters. We explore some different ways we have used over the past 25 years, to make sure that research has the greatest impact both in the UK and abroad. We discuss first the process of providing easy‐read versions of research at the Norah Fry Research Centre, where two of us, Goodwin and Townsley, worked on a series called Plain Facts funded by the Joseph Rowntree Foundation. We have always used different media such as audio, but more recently, have started to use video as a way of getting information out to people with learning disabilities. We aim to present the ‘easy information’ work done at Norah Fry, to reflect on its impact, and set it within the context of the move towards accessible information more generally, questioning some of the premises about ‘impact’ on which accessible information is based.
Love in a Cold Climate: changes in the fortunes of LGBT men and women with learning disabilities?
Authors: Abbott David
Published: May 2015

Accessible Summary

This study goes back to look at some research which was about gay, lesbian, bisexual and transgender (LGBT) people with learning disabilities.

Have things got better or worse for LGBT people as this research was performed?

It is hard to say whether things have changed because we still do not know very much about the experiences of LGBT people with learning disabilities themselves.

‘Secret Loves, Hidden Lives?’ was a piece of research which explored the lives and loves of gay, lesbian and bisexual people with learning disabilities. The research arguably influenced the development of policy in that same sex relationships were subsequently mentioned in English government policy on learning disability. The research had an extensive programme of dissemination, and whilst no systematic attempt was made to measure the impact of the dissemination or the research, this study suggests ways in which the research might (or might not) have made a difference in relation to: telling untold stories, supporting front line workers with practical resources, challenging negative assumptions held by staff in services and putting LGBT people with learning disabilities in touch with each other. The study also considers work which was left undone and reflects on the opportunities to support LGBT people with learning disabilities in the current context of financial austerity.
Perceptions of low‐income mothers about the causes and ways to prevent overweight in children
Authors: Danford C. A. , Schultz C. M. , Rosenblum K. , Miller A. L. , Lumeng J. C.
Published: May 2015

Background

Childhood overweight and obesity remain major health conditions, affecting nearly one‐third of children in the USA. Multiple factors have been identified that contribute to children becoming overweight; however, little is known regarding what low‐income mothers perceive to be the causes of and the ways to prevent children from becoming overweight.

Methods

Low‐income mothers (n = 286) with children aged 4–8 years participated in semi‐structured interviews, during which they were asked for their opinions about the causes of and ways to prevent children from becoming overweight. After themes were identified, interviews were coded for the presence or absence of each theme.

Results

The majority of mothers were non‐Hispanic White (69.2%) and overweight or obese (77.3%). Additionally, many of the children (41.9%) were overweight or obese. Six causes of children becoming overweight were identified by mothers: types or quantities of food eaten (90.9%); parenting behaviours (44.9%); lack of activity (42.3%); genetics, slow metabolism or medical issues (24.5%); stress or emotion (5.2%); and limited access to resources (3.5%). Five ways to prevent children from becoming overweight identified by mothers included the following: healthy eating (84.9%), more activity (54.8%), limiting screen time (19.9%), limiting sugar‐sweetened beverages (12.2%) and drinking more water (6.6%). The majority of mothers (77.1%) reported that they carried out their suggestions to prevent their children from becoming overweight.

Conclusion

Within this cohort with a high prevalence of maternal and child overweight, most mothers identified many of the evidence‐based strategies for childhood obesity prevention. Future intervention development may benefit from focusing on content areas that were less commonly identified by mothers as well as helping mothers translate knowledge to implementation.
Risk of deep vein thrombosis and pulmonary embolism after heart transplantation: clinical outcomes comparing upper extremity deep vein thrombosis and lower extremity deep vein thrombosis
Authors: Elboudwarej Omeed , Patel Jignesh K. , Liou Frank , Rafiei Matthew , Osborne Ashley , Chai Wanxing , Kittleson Michelle , Czer Lawrence , Stern Lily , Esmailian Fardad , Kobashigawa Jon A.
Published: May 2015

Introduction

Heart transplant patients have risk factors that place them at higher risk for acute venous thromboembolism (VTE), which includes deep vein thrombosis (DVT) and pulmonary embolism (PE), than the general population. We assessed for rate of VTE and incidence of PE‐related mortality among heart transplant patients.

Materials and Methods

A total of 1258 heart transplant patients were evaluated for the development of VTE. The diagnosis of DVT was made by Duplex ultrasonography, and PE was diagnosed by computerized tomography pulmonary angiography or ventilation–perfusion radionuclide scan. PE‐related mortality was assessed at one yr, three yr, and five yr post‐transplant.

Results

A total of 117 (9.3%) patients were diagnosed with DVT, including 65 of 117 (55.5%) with lower extremity DVT (LEDVT) and 52 of 117 (44.4%) with upper extremity DVT (UEDVT). A total of 24 (1.9%) patients experienced PE with seven (29.2%) resulting deaths. The rate of LEDVT and UEDVT was similar (55.5% vs. 44.4%); however, the incidence of PE was greater for those with LEDVT (23.1% vs. 7.7%; p = 0.04). Patients with PE had lower survival over the five‐yr follow‐up period compared to those with DVT only (67% vs. 81%; p = 0.51).

Conclusion

Heart transplant patients have a high incidence of VTE despite current best practice, indicating a need for a more aggressive approach to thromboprophylaxis.
Incidence and early outcomes associated with pre‐transplant antivimentin antibodies in the cardiac transplantation population
Authors: Young Raymond K. , Dale Bethany , Russell Stuart D. , Zachary Andrea A. , Tedford Ryan J.
Published: May 2015

Background

In cardiac transplant recipients, the development of antibodies to the endothelial intermediate filament protein vimentin (antivimentin antibodies, AVA) has been associated with rejection and poor outcomes. However, the incidence of these antibodies prior to transplantation and their association with early rejection has not been investigated.

Methods

Pre‐transplant serum was analyzed from 50 patients who underwent de novo cardiac transplant at Johns Hopkins Hospital from 2004 to 2012. Demographic, one‐yr rejection, and survival data were obtained from the transplant database.

Results

The incidence of pre‐transplant AVA was 34%. AVA‐positive patients were younger (p = 0.03), and there was an a trend toward incidence in females (p = 0.08). Demographic data were similar among both groups. AVA positivity did not predict rejection in the first year post‐transplant. There was no difference in rejection‐free graft survival (53 vs. 52%, p = 0.85) at one yr. Similarly, there was no difference in graft survival at one yr (82 vs. 88%, p = 0.56) or graft survival at a median follow‐up of 23 and 26 months, respectively (76 vs. 85%, p = 0.41).

Conclusions

AVA is common in the cardiac pre‐transplant population with a higher incidence in the young. The presence of detectable AVA did not correlate with early post‐transplant rejection or graft survival.