bluuebunny/crossref_metadata_2025_split huggingface dataset:
The role of the volunteer research assistant in a hospice setting
Authors: Brigden Charlotte , Southon Jeff , Cawley Declan 
Published: August 2016

BackgroundA hospice setting has a small, busy research team and the volunteer research assistant is an important role within the team, providing additional support for delivery of research projects and related activities.The role was first introduced in 2014 following the development of research infrastructure and capacity building within the organisation.Aim and methodTo introduce volunteers to support hospice research including:Assisting with set up and co-ordination of studies. Including support with the organisation and collation of study materials, meetings and training to the site.Assisting the set up and running of research events by helping organise attendance lists and other materials. Greeting and registering attendees on arrival.Data entry and data checking.ResultsInvolved volunteers has provided the hospice with additional research capacity to deliver projects and other research related activities.Volunteers with different skills, expertise and experience of the organisation has enabled matching their input to the needs of the research activity.Experience of involving volunteers has enabled development of a role description for a ‘volunteer research assistant’.Introducing the role of the ‘volunteer research assistant’ has helped to promote ownership of this unique position to those involved. There is value in developing this role to provide regular support in developing, setup, delivering and disseminating research within hospices.ConclusionsInvolving volunteers as part of the research team has been a rewarding one working towards the hospice’s strategy to become increasingly research active to provide the best care for patients and their families.
Understanding complex need in palliative care: the perceptions of professionals across 3 settings
Authors: Johnston Sarah , Winstanley Catherine , Morrish Jamie , Finucane Anne , Spiller Juliet , Carduff Emma 
Published: August 2016

IntroductionComplex needs for palliative care patients are not well defined, yet clarity is necessary to meet the needs of patients and their families in all settings, round the clock.AimTo explore professionals’ understandings of patient complexity in palliative care across 3 settings.MethodsWe triangulated the findings from 3 qualitative studies. Semi-structured interviews were conducted with professionals from primary, specialist palliative and acute care. Interviews were audio-recorded, transcribed, coded thematically and analysed by each study researcher, independently. Emerging themes were then discussed as a team and a framework was devised to comprehensively collate, compare and contrast all three sets of results.ResultsThirty-four interviews were conducted across the 3 settings. A number of themes spanned all three settings. The interaction between diverse physical, psychosocial and spiritual needs, existing co-morbidities, intractable symptoms and complicated social issues exacerbated patient complexity, particularly for primary care professionals ‘out of hours’. Poor communication was highlighted, particularly between generalists and specialists, although primary care professionals highlighted the potential of electronic care summaries. Generalists felt they lacked skill in identifying and caring for complex patients and time for professional development in palliative care.ConclusionPatient complexity is influenced by patient factors but also environmental factors, specific to each setting. Better communication between disciplines could improve the care of patients outside normal working hours. A clear definition of complexity will improve the identification of patients for specialist palliative care, which has implications for resource allocation across all settings.ReferencesGrant RW, Ashburner JM, Clemens CH,et al. Defining Patient Complexity from the Primary Care Physician’s Perspective.Ann Intern Med2011;155:797–804Weissman DE, Meier DE. Identifying patients in need of a palliative care assessment in the hospital setting a consensus report from the to advance palliative care.J Palliat Med2011;14(1):1723
The bereavement experiences and support needs of family carers: a supplementary qualitative analysis of free text data from the peolcpsp research priority setting exercise
Authors: Harrop Emily J , Byrne Anthony , Morgan Fiona , Nelson Annmarie 
Published: August 2016

BackgroundAlthough grief is a natural process, in which most people learn to adjust without the need for formal support, the relationship between grief and poor mental and physical health is well established (Agnewet al., 2010). Research also suggests that there may be grief experiences and support needs which are specific to family members who have provided end of life care (eg Stajduharet al., 2013).MethodsA research priority setting exercise for palliative and end of life care was conducted, involving a public survey of 1403 people. Respondents included patients, current and bereaved carers, health and social care professionals, volunteers and members of the public. To fully explore the views and experiences reported by participants a supplementary thematic analysis was carried out on the free text data. This presentation reports on themes relating to bereavement.ResultsResponses demonstrated a relationship between traumatic deaths, feelings of guilt and bereavement experiences. Respondents also highlighted the “void” caused by the sudden withdrawal of professional support to families after death. Communication and support needs which were identified by participants included more effective communication and emotional support around end of life care planning and decision making and continuity of care and follow up support post-death.ConclusionThis analysis demonstrates some of the specific effects that caring for a loved one at the end of life can have on grief experiences. Clinical implications are identified, namely improved communication around the time of death and more effective follow up approaches post death.ReferenceTapsfield J, Hall C, Lunan C,et al. Many people in Scotland now benefit from anticipatory care before they die: an after death analysis and interviews with general practitioners.BMJ Support Palliat Care2016. doi:10.1136/bmjspcare-2015-001014
Striving to become research active hospices: the story in one region through roles and collaboration
Authors: Leung Joanne , Brigden Charlotte 
Published: August 2016

BackgroundOwing to different governance structures and procedures outside NHS organisations, independent hospices often face challenges to conduct research (Perkinset al., 2014). Yet, The Commission into the Future of Hospice Care highlighted the importance of research in hospices recommending how research could be implemented, including introduction of staff with ‘research’ in job titles and partnerships with universities (Payneet al., 2013).AimsFive hospices within one region in England have begun implementing research through appointing a research facilitator and a research practitioner. They aim tofacilitate collaboration between organisationsenhance research awareness among staffsupport and develop research projects within hospicesengage in others’ researchMethodThe research posts have reached beyond their hospices. One belongs to the regional NIHR CRN and another has a formal link with a local university. In 2015, a local palliative care research group was formed, invited clinicians and academics to develop research activity collaboratively. Both research facilitator and practitioner are members and facilitators of the group.ResultsReviewing the research strategy of the hospices has been initial work to reflect and standardise the research practices across hospices. Abundant information on training, funding opportunities and research studies has also been widely shared amongst hospices. A local research day, the research group and research posts have allowed hospices to work collectively.ConclusionWork within and between hospices is a stimulating opportunity to include wider patient participation in research, extending the audience to comprehend the importance of research and increasing potential for evidence based palliative care.ReferencesPayne S, Preston N, Turner M, Rolls L. Research in palliative care: can hospices afford not to be involved? A report for the Commission into the Future of Hospice Care; 2013.https://www.hospiceuk.org/what-we-offer/commission-into-the-future-of-hospice-care/commission-resources. Accessed May 24, 2016Perkins P, Day R, Hapeshi J, Dixon L, Nyakuhwa R.How to conduct research in an independent hospice: practical tips and advice; 2014.http://apmonline.org/wp-content/uploads/2015/04/EJPC_21_5_Final-Paper.pdf. Accessed May 18, 2016
Family’s voice helping relatives or friends in the last days of life
Authors: McEvoy Mel , Blenkinsopp John , Scott Eileen 
Published: August 2016

Difficulties exist with end of life in acute hospitals. EoLC (NHS, 2013). They are not designed for dying patients and families (Caswellet al.,2015). Health professionals struggle to recognise and manage palliative care transitions. Shared understanding between relatives and staff relate to an improvement in care (Gottet al.,2011). ‘The Family’s Voice’ diary improves communication by involving families to document contemporaneously their observations of care (McEvoyet al.,2012).Can a communication tool developed for family members, in one trust, be transferable to other hospital and health settings? Using a mixed method approach the quantitative approach rated the symptom management of the dying patient, the qualitative data captured the quality of the perceived care being delivered. Combined they provide a comprehensive account of the family’s experience of care. The analysis of the data used SPSS software and the (free text) by Content Analysis.All sites participated. Scores concerning symptoms control improved. Families felt staff treated the patient well and felt supported. Specific diagnosis and difficulty of symptom management were linked. The categories that emerged were: awareness of approaching death; communication and compassion; symptom management; the environment; concerns about clinical and fundamental care, family’s expectations; building relationship; spirituality and the need to address concerns immediately.The Diary is used by relatives who record aspects of clinical care. It has been tested across nine organisations. The diary is a process of empowering family members and a measurement of the relative’s perception of care. It develops palliative care skills in clinical staff and promotes spirituality and pre-bereavement management.ReferencesCaswell G, Pollock K, Harwood R,Porock D.Communication between family carers and health professionals about end of life care for older people in a cute hospital setting: a qualitative study.BMC Palliat Care2015;14:35Gott M, Ingleton C, Bennett MI, Gardiner C. Transitions to palliative care in acute hospitals in England: qualitative study.Br Med J2011;342:1773McEvoy M, Pugh E,Blenkinsopp J.Communication diary to aid care at the end of life.Nurs Times2012;108(17):24–27
Involving prisoners in action research to improve palliative care: findings from the ‘both sides of the fence’ study
Authors: Turner Mary , Peacock Marian , Varey Sandra , Froggatt Katherine , Payne Sheila , Gibson Bob , Scott Gill , Fletcher Andrew 
Published: August 2016

IntroductionWith more than 12,000 older prisoners in the UK, deaths in custody are increasing ,1as is the need for palliative care. The ‘Both sides of the fence’ study used action research methodology in one prison with a high population of older offenders. Interviews with staff and prisoners in Phase 1 provided the foundation for action cycles that took place in Phase 2; this paper reports action cycles directly involving older prisoners.Aim(s) and method(s)The aim was to engage with prisoners in making meaningful improvements to palliative care. First, an Older Prisoners Group (OPG) was established and facilitated by prison staff and researchers. The OPG met bi-monthly, with smaller groups of prisoners working on tasks between meetings. OPG members created an information leaflet on planning for the end of life in prison. They were also involved in the development of an Older Prisoners Unit (OPU) to reduce intimidation of vulnerable older prisoners by younger offenders.ResultsOne thousand copies of the leaflet were produced for use by prisoners in the research site and other prisons. The OPU is a protected environment for prisoners over 50, with medication lockers in each room; prisoners in the OPU have reported feeling safer and less stressed. They also reported increased self-esteem through their involvement in the research.Conclusion(s)Involving prisoners in action research can have positive benefits for both prisoners and staff. Sustainability of these benefits will be achieved by the continuation of the OPG after the end of the study.ReferencePrison Reform Trust.Bromley Briefings Prison Factfile, Autumn 2015. London: Prison Reform Trust; 2015.
Supporting family caregivers in the transition between hospital and their relative’s preferred place for end of life care
Authors: Campling Natasha , Duke Sue , Firth Pam , Lund Susi , Lunt Neil , May Carl , Richardson Alison 
Published: August 2016

IntroductionA recent national survey of carers found that only half of family carers providing end of life care received the support they needed and this support was less likely to be provided in hospital.1Similarly, a study of discharge in older adults found that most family caregivers are not involved in discharge decisions.2AimsThis study aims to understand and support family in the work they do to facilitate end of life discharge. The study objectives are to:Design and assess the usability of the intervention for family members supporting a person being transferred from hospital to their preferred place for end of life care.Implement the intervention in hospital practice to reveal the factors that promote and inhibit implementation of the intervention; and develop toolkits to facilitate transfer of the intervention between settings.MethodsThe intervention integrates tested support components (reduction of uncertainty, information provision and coaching) within the framework of Family Sense of Cohesion Theory, to promote family resilience and, thereby, facilitate effective 24/7 care. The intervention has been clinically modelled with practitioners as conversational prompts, each addressing an intervention component (meaningfulness, uncertainty, comprehensibility and manageability). Using Participatory Learning and Action (PLA) methodology the study will be conducted in five developmental cycles.ResultsThe intervention will be piloted at three clinical sites from July 2016. Following this, there will be further roll out to 7 additional sites across England (through to September 2017).ReferencesNational Council for Palliative Care.Who Cares? Support for carers of people approaching the end of life. London: The National Council for Palliative Care; 2013Waring J, Marshall F, Bishop S,et al. An ethnographic study of knowledge sharing across the boundaries between care processes, services and organisations: the contribution to 'safe' hospital discharge.Health Services and Delivery Research2014;2(29)
Sexual healing: is there something we are missing?
Authors: Middleton-Green Laura , Ward Andrea 
Published: August 2016

BackgroundPsychosexual health concerns in life limiting illness can result from treatments, altered body image, carer strain, depression, symptoms and medication (Shell, 2008). However, there is evidence that under-assessment of sexual health concerns leads to unmet need (Taylor 2009).AimThis study seeks to explore how well psychosexual assessment is undertaken within a hospice inpatient unit. The aim was to identify areas of strengths and weakness in order to guide future staff education and support.MethodAn audit tool was developed and piloted. Data was collected on documented assessment of altered sexuality, libido, intimate relationships, and the presence of any symptoms or medications known to influence sexual function. Data was obtained from 15 randomly selected patient notes.Results14/15 patients received a psychosocial assessment including the impact of illness on mood and relationships. However, none of the clinical notes included an assessment of psychosexual health concerns despite identifications of common risk factors including medication and symptomatic effects.ConclusionGood assessment and psychosocial care in life limiting illness is the key to enable the patients to achieve a maximum quality of life. Although the study found a range of psychosocial foci by the multidisciplinary team, there was much less of a focus on needs around sexuality and intimacy. Plans for future work include multiprofessional education, introduction of a personalised care plan, and research to identify barriers to discussing sexuality.ReferencesShell JA. Sexual issues in the palliative care population.Seminars in Oncol Nurs2008;2:131–134Taylor B. Experiences of sexuality and intimacy in terminal illness: a phenomenological study.J Palliative Med2009;28(5):438–447
Gauge B–L model of radiative neutrino mass with multipartite dark matter
Authors: Ma Ernest , Pollard Nicholas , Popov Oleg , Zakeri Mohammadreza 
Published: August 2016

We propose an extension of the Standard Model of quarks and leptons to include gauge B–L symmetry with an exotic array of neutral fermion singlets for anomaly cancellation. With the addition of suitable scalars also transforming under U(1)[Formula: see text], this becomes a model of radiative seesaw neutrino mass with possible multipartite dark matter. If leptoquark fermions are added, necessarily also transforming under U(1)[Formula: see text], the diphoton excess at 750 GeV, recently observed at the Large Hadron Collider, may also be explained.
The relationship between normal drag, relay ramp aspect ratio and fault zone structure
Authors: Childs C. , Manzocchi T. , Nicol A. , Walsh J. J. , Soden A. M. , Conneally J. C. , Delogkos E. 
Published: August 2016

Abstract
The boundaries between pairs of adjacent fault segments within normal fault arrays define a spectrum of structures, from relay ramps where the length of overlap between the fault segments is much larger than the separation, through low aspect ratio (overlap/separation) relay ramps and ultimately to underlapping fault segments. Where fault segments underlap, transfer of displacement between them is accommodated by a connecting monocline. When displacement increases and a through-going fault forms, relay ramps are preserved as fault-bounded zones of elevated bed dip and monoclines are preserved as areas of normal drag. Therefore, the orientation and magnitude of bed dips within and adjacent to a fault zone, and the numbers of segments seen on a cross-section through it, depend largely on the aspect ratios of relay ramps in the initial fault array. The aspect ratio of relay ramps varies between different fault systems. An analysis of the geometry of 512 relay ramps from 13 different fault systems suggests that the main controls on aspect ratio are the strength of the sequence at the time of faulting and the underlying structure.
Towards a history of women in the geosciences
Authors: Kölbl-Ebert M. , Turner S. 
Published: August 2016

Abstract
Women have been pioneers in geoscience disciplines such as the structure of the Earth, palaeontology, oil exploration, organic geochemistry and plate tectonics theory. Gaining professional employment and geological credence came slowly, with few women recognized before the late nineteenth century. We highlight their important roles and the obstacles they have overcome to gain degrees and employment, as well as high office.

Supplementary material:
Supplementary table 1 shows a selection of women geological pioneers who lived, worked and died mainly within the nineteenth century or earlier, and supplementary table 2 gives a selection of geoscience women who lived, worked and died mainly within the twentieth century; they are both available at
https://doi.org/10.6084/m9.figshare.c.3283388
A Bayesian Approach to Parameter Inference in Queueing Networks
Authors: Wang Weikun , Casale Giuliano , Sutton Charles 
Published: August 2016

The application of queueing network models to real-world applications often involves the task of estimating the service demand placed by requests at queueing nodes. In this article, we propose a methodology to estimate service demands in closed multiclass queueing networks based on Gibbs sampling. Our methodology requires measurements of the number of jobs at resources and can accept prior probabilities on the demands.
Gibbs sampling is challenging to apply to estimation problems for queueing networks since it requires one to efficiently evaluate a likelihood function on the measured data. This likelihood function depends on the equilibrium solution of the network, which is difficult to compute in closed models due to the presence of the normalizing constant of the equilibrium state probabilities. To tackle this obstacle, we define a novel iterative approximation of the normalizing constant and show the improved accuracy of this approach, compared to existing methods, for use in conjunction with Gibbs sampling. We also demonstrate that, as a demand estimation tool, Gibbs sampling outperforms other popular Markov Chain Monte Carlo approximations. Experimental validation based on traces from a cloud application demonstrates the effectiveness of Gibbs sampling for service demand estimation in real-world studies.
Targeting Fibroblast Growth Factor Receptor 1 for Treatment of Soft-Tissue Sarcoma
Authors: Chudasama Priya , Renner Marcus , Straub Melanie , Mughal Sadaf S. , Hutter Barbara , Kosaloglu Zeynep , Schweßinger Ron , Scheffler Matthias , Alldinger Ingo , Schimmack Simon , Persigehl Thorsten , Kobe Carsten , Jäger Dirk , von Kalle Christof , Schirmacher Peter , Beckhaus Marie-Kristin , Wolf Stephan , Heining Christoph , Gröschel Stefan , Wolf Jürgen , Brors Benedikt , Weichert Wilko , Glimm Hanno , Scholl Claudia , Mechtersheimer Gunhild , Specht Katja , Fröhling Stefan 
Published: August 2016

Abstract
Purpose: Altered FGFR1 signaling has emerged as a therapeutic target in epithelial malignancies. In contrast, the role of FGFR1 in soft-tissue sarcoma (STS) has not been established. Prompted by the detection and subsequent therapeutic inhibition of amplified FGFR1 in a patient with metastatic leiomyosarcoma, we investigated the oncogenic properties of FGFR1 and its potential as a drug target in patients with STS.
Experimental Design: The frequency of FGFR1 amplification and overexpression, as assessed by FISH, microarray-based comparative genomic hybridization and mRNA expression profiling, SNP array profiling, and RNA sequencing, was determined in three patient cohorts. The sensitivity of STS cell lines with or without FGFR1 alterations to genetic and pharmacologic FGFR1 inhibition and the signaling pathways engaged by FGFR1 were investigated using viability assays, colony formation assays, and biochemical analysis.
Results: Increased FGFR1 copy number was detected in 74 of 190 (38.9%; cohort 1), 13 of 79 (16.5%; cohort 2), and 80 of 254 (31.5%; cohort 3) patients. FGFR1 overexpression occurred in 16 of 79 (20.2%, cohort 2) and 39 of 254 (15.4%; cohort 3) patients. Targeting of FGFR1 by RNA interference and small-molecule inhibitors (PD173074, AZD4547, BGJ398) revealed that the requirement for FGFR1 signaling in STS cells is dictated by FGFR1 expression levels, and identified the MAPK–ERK1/2 axis as critical FGFR1 effector pathway.
Conclusions: These data identify FGFR1 as a driver gene in multiple STS subtypes and support FGFR1 inhibition, guided by patient selection according to the FGFR1 expression and monitoring of MAPK–ERK1/2 signaling, as a therapeutic option in this challenging group of diseases. Clin Cancer Res; 23(4); 962–73. ©2016 AACR.