bluuebunny/crossref_metadata_2025_split huggingface dataset:
Barriers to provision of high quality care for patients with end stage heart failure
Authors: Mair Frances , Brown Susan , Morrison Deborah , Macleod Una , May Carl 
Published: March 2012

BackgroundIt is known that those with end stage heart failure (ESHF) experience symptoms that have a negative impact on their daily lives and that they feel unsupported.AimsThe present study aims to identify barriers to provision of high quality care for those with ESHF.MethodsSemistructured interviews with patients and close persons with ESHF (26 patients; 18 close persons). Qualitative data analysed using thematic analysis but informed by Normalisation Process Theory. Inclusion criteria: grade 3 or 4 NYHA classification heart failure, with ongoing symptoms despite optimal therapy, and a history of admissions or multiple health professional contacts for heart failure.ResultsPolypharmacy makes adherence difficult and is perceived as a precipitant of admissions. This is exacerbated by the fact that patients are dispensed ever changing brands of different coloured tablets, which makes adherence challenging. Multiple appointments at different clinics (for both cardiac and non-cardiac problems) on different days pose major difficulties for patients, both from the logistical perspective (eg, organising transportation) but also physically, as attendance at these appointments can be exhausting. Lack of continuity of care and poor communication between professionals and professionals and patients also presents difficulties. Information is often not communicated to patients in ways that they find coherent. Importantly, participants are usually unable to identify suitable emergency care plans that could help them when they experience deteriorations in their condition.ConclusionsUncoordinated care, multiple appointments and polypharmacy are major problems and there is clear potential for rationalisation of therapeutic regimens and systems for follow up. Those with ESHF need clear pathways/plans regarding what to do in an emergency and need access to services to help them action such plans. More counselling services are needed to help support these individuals who have a range of support needs, particularly as they transition from chronic disease management to palliative care.
‘They are just beginning to think: who am I?’ Health professionals on ill children's spirituality
Authors: Llewellyn Henry , Jones Louise , Kelly Paula , Craig Finella , O’Gorman Bernadette , Bluebond-Langner Myra 
Published: March 2012

BackgroundThere is widespread acknowledgement that care should include spirituality alongside physical, psychological and social aspects. Yet, little is known about how spiritual issues arise in conversations between healthcare professionals (HCPs), children and young people (CYP) and families and how they are managed in practice. The authors report qualitative data from a workshop with HCPs and faith leaders (FLs) which explored issues of concern to HCPs and FLs in anticipation of developing a community-based faith network across North Central London to meet these needs.AimTo understand how HCPs conceptualise spirituality and their experiences in addressing spiritual issues as they emerge in practice.MethodEthnographic participant-observation of a 1-day workshop to explore HCPs' (n=22) experiences of and attitudes towards spiritual issues and care for CYP and families; FLs (n=9) were present. Presentations and anonymised case scenarios were used to stimulate discussion. Presentations and discussions were audio-taped and transcribed verbatim. Four researchers recorded detailed field notes throughout the workshop. Data were analysed thematically.ResultsFour themes emerged from statements by HCPs:(1)Concepts of spirituality(2)Loss(3)Roles(4)Conflicts and challenges.(1)While spirituality for adults and CYP was seen to encompass a search for meaning, hope, and a sense of connectedness to self, others and the world; it was assumed as underdeveloped in CYP.(2)HCPs described CYP and families' losses of future, meaning, relationships, hope and faith.(3)HCPs approached spiritual care by ‘being there’ for patients and families; supporting spiritual enquiry; signposting to specialists such as community FLs where appropriate.(4)Challenges included, trying to balance the ideal of openness with managing hope in the face of a poor prognosis.ConclusionThe way in which HCPs conceptualise spirituality in the context of CYP's development and multiple losses for CYP and families has implications for training including education in managing tensions between openness with CYP and respect for parents' wishes.
Piloting of an e-learning programme on children's palliative care
Authors: Downing Julia , Marston Joan , Boucher Sue 
Published: March 2012

BackgroundThe International Children's Palliative Care Network (ICPCN) has recognised the need to make training on children's palliative care (CPC) accessible and affordable to all who need it. A recent survey on the availability of CPC training internationally, demonstrated a lack of training in many parts of the world. Thus ICPCN developed a pilot e-learning programme to look at the feasibility of ICPCN using elearning for CPC.MethodAn e-learning programme was developed on pain assessment and management that links to new WHO guidelines for persisting pain in children due to be launched later 2011/early 2012. Articulate software was purchased along with a subscription to a Learning Management System (LMS), Articulate online. The programme is aimed at doctors, clinical officers and nurses. Following a brief introduction to the programme, there are discrete modules addressing palliative care in children, pain in children, pain assessment, pain management and the new WHO guidelines. Some resources and a glossary of terms has been included and there is a multiple choice assessment for students to complete. Students are encouraged to undertake a clinical placement, and placement guidelines are provided. Participants have been invited to undertake the programme from four different countries, including Argentina, Romania, Uganda and America. Notice about the programme has also been put up on the ICPCN website. An evaluation form will be completed by all participants. Results: Recruitment for the programme is currently on-going, and the pilot is due to finish by the end of 2011.Resultsof the piloting will be shared along with implications for future training developments.ConclusionThe need for training on CPC is great, and there is demand from many different parts of the world for training. In order for CPC training to be accessible and affordable, elearning courses need to promoted and developed where appropriate.
Prescribing in paediatric palliative care: an association for paediatric palliative medicine survey
Authors: Brook Lynda , Aindow Anita , Jassal Sat 
Published: March 2012

BackgroundMost indications and doses of medicines used in paediatric palliative medicine are derived from anecdotal evidence and involve scaled down adult doses.AimsTo review current prescribing practices and identify priority areas for research and prescribing guidance.MethodsQuestionnaire survey of Association of Paediatric Palliative Medicine (APPM) members and non-medical prescribers working in paediatric palliative care.ResultsTwenty-seven medical and nine non-medical prescribers working in hospice (49%), hospital (57%) and community (66%) completed the survey. Priorities for further systematic review evidence and consensus guidance to support prescribing were identified as (% reporting as important or priority): 1 Equivalent starting doses of strong opioids administered PO, SC or IV in babies and young children (89%) 2 ketamine (81%) 3 buccal or intranasal fentanyl (77%) 4 methadone (74%) 5 dexamethasone doses for different indications (71%) Experience of prescribing these options ranged from 63% prescribing strong opioids in babies and young children several times a year to 47% never having prescribed methadone. Respondents reported prescribing ketamine regularly several times a year (31%) or not at all (28%). Respondents reported never prescribing buccal or intranasal fentanyl (39%) or prescribing regularly several times a year (33%). 53% prescribed dexamethasone regularly several times a year. 61% prescribers would start wherever a dose range (eg, 200–300 mg/kg/dose) seemed most appropriate, the remainder at the lowest dose. When calculating doses 71% respondents would round up or down to the nearest doses that is practical to administer as long as the actual dose administered falls within the dose range given but 14% would always round down.ConclusionsRespondents identified clear priorities for further systematic review evidence and consensus guidance to support prescribing. Prescribing practices appear to vary considerably from individual to individual: this requires further exploration. Doses given as a range can be ambiguous.
Palliative care in the acute hospital setting: a qualitative interview study
Authors: Richards Naomi , Ingleton Christine , Gott Merryn 
Published: March 2012

BackgroundAccess to high quality palliative care at the end of life is becoming of increasing public health concern, and UK policy has highlighted a need to improve palliative care in the hospital setting. The majority of deaths in the UK occur in acute hospitals, and the numbers of patients dying in this setting are predicted to increase over coming years.AimThe aim of this qualitative study was to explore the perspectives of patients with palliative care needs regarding recent care received in the acute hospital setting.MethodsSixteen patients with palliative care needs participated in semistructured interviews to explore views and experiences of a recent hospital admission. Patients were identified during a survey of palliative care needs at two UK acute hospitals, interviews were conducted postdischarge. Data were analysed using the principles of thematic analysis.ResultsFindings indicated that most hospital admissions were emergency/crisis led, and a palliative approach to care was rarely evident. Patients reported particular issues relating to (1) continuity of care, both within the hospital setting and after discharge; (2) communication between care providers in secondary care and communication with the patient; (3) communication between primary and secondary care, and issues surrounding discharge from hospital.ImplicationsThe palliative care needs of patients within the acute hospital setting may not be adequately addressed. Improved communication and continuity of care are necessary to enhance the provision of quality palliative care. The study highlights a need to further explore palliative care provision in the acute hospital setting from the perspectives of both patients and providers, and to further define and expand the role of generalist palliative care providers in acute hospitals.
Analysis in qualitative longitudinal research: possibilities, benefits and challenges
Authors: Carduff Emma , Scott Murray , Marilyn Kendall 
Published: March 2012

BackgroundQualitative longitudinal research (QLR) generates rich data which would seem ideal for exploring the dynamic experiences of patients towards the end of life, yet most studies in palliative care are cross-sectional.AimTaking a case study from a QL project I will highlight the rich analytical possibilities which result from QLR compared to a snapshot approach, while reflecting on the challenges and how they can be overcome.MethodsThe project adopted a qualitative longitudinal design, employing indepth interviews with 16 participants with metastatic colorectal cancer who had advanced disease but were expected to survive a year. Narrative and thematic analyses were employed to capture the major issues and themes at each time point and longitudinal analysis was conducted to explore how the participants' experiences evolved over time.Key findingsThematic analysis at each time point allows the researcher to synthesise the experiences of the group as they approach the end of their lives. Although useful for informing practice, thematic techniques may neglect the nuances of the individual experience. Narrative techniques allow the researcher to maintain the participant's story rather than fragmenting it, thus better capturing the individual experience. Longitudinal analysis further enhances this interrogation as it follows changes over time. Managing the immense volume of data that is generated in QLR can be challenging so the use of a carefully designed strategy for the analysis, and a qualitative research computer package (such as NVivo) can confront some of the complexities.ConclusionsThe range of analytical possibilities available in QLR means that with careful planning and reflexive practice the benefits outweigh the challenges. The findings can inform us about how the participant's experience changes in real time which is not possible with cross-sectional analysis. Such research can help model patient-centred healthcare which is responsive to dynamic needs.
Poster to paper – the academic value of the palliative care congress
Authors: McKeown Alistair , Al-khayer Ahmed , Clyde Aileen , Basler Mike , Keeley Paul W , Clark David 
Published: March 2012

The Palliative Care Congress (PCC) is a biennial conference co-hosted by The Association for Palliative Medicine (APM) and The Palliative Care Research Society (PCRS). Each year there are a number of poster presentations, but currently there is no objective measure of the scientific content of this. Establishing the proportion of posters that progress to publication in peer-reviewed journals is one possible measure. The publication rate reported by other European medical societies ranges from 10% to 70% (median 42%). This is the first study to measure the publication rate of poster presentations at a palliative care meeting.AimTo establish what proportion of the posters presented in the PCC progress to publication in peer reviewed journals, and to compare the results with the publication rate of other European medical societies.MethodAll posters presented from 2002 to 2008 were included. Posters from 2010 were not considered as sufficient time for publication was not considered to have elapsed. MEDLINE, Pub Med, Google Scholar, Embase and HighWire were searched to look for peer-reviewed papers generated from each abstract. Search terms used included each author's name and key words of the abstract title.ResultsOver the four congresses studied, a total of 204 posters were presented, with 72 of these progressing to peer reviewed publication (35%). Publication rate ranged from 26% in 2002 to 40% in 2006 and 2008. Publication was across a range of journals, with the majority appearing in palliative care and pain medicine literature.ConclusionsThe PCC is generating poster abstracts of comparable academic value to other specialist societies throughout Europe. Using this method of analysing objectively, the publication rate may be a useful way of providing feedback to the specialist interest groups of the PCC as a way of incentivising research areas.
Can e-learning help surface or change medical students' attitudes towards palliative care, death and dying?
Authors: Gibbins Jane , Williams Jane , Cooke Jules , Alder Dominic , Forbes Karen 
Published: March 2012

Aimse-Learning tutorials are usually used to teach knowledge and skills in medicine. Professional attitudes are important in many areas of medicine, but particularly so in palliative care, where seeing death as failure, therapeutic nihilism, avoiding dying patients and fears about opioids can all influence patient care adversely. The literature suggests that medical students have misconceptions about palliative care, and articulate anxieties and expectations similar to those of the lay public. No studies have explored the use of e-learning tutorials and attitudes. Methods: e-learning tutorials were produced by final year medical students about palliative care topics of their choice and developed further by the departments of Palliative Medicine and Medical Education. The authors performed a mixed methods study to evaluate whether these tutorials enable students to consider their attitudes and/or teach attitudes. As part of each e-learning tutorial, students were asked to write reflective notes on what they had learnt.Results133 students wrote 1012 reflective comments on five tutorials. The authors analysed 499 of these comments using a qualitative coding system. 322 (65%) of the 499 responses written by senior medical students revealed reflection on an attitude relevant to the scenarios presented within the e-learning tutorials. Of these 43% made a general reflection on a relevant attitude, 37% reflected on their own attitude/s and 19% indicated a change in their attitude following the e-learning tutorial.ConclusionOur findings suggest that e-learning can surface attitudes and may encourage attitudinal change about palliative care for final year medical students. The results of this reflective analysis will be presented and discussed.
High fidelity simulation – a novel approach to end of life teaching
Authors: Reed Nikki , Boulstridge Lisa , Nelson Annmarie 
Published: March 2012

BackgroundThe hospice model of care is the model of excellence for delivering high quality care to dying patients. However, only a small number of patients in the UK actually die in a hospice with the majority of patients dying in hospital. The major challenge faced by specialist palliative care services has been the transfer of best practice from the hospice setting to other care settings. At the Hollier Simulation Centre an end of life course has been developed for band five and six nurses within the acute trust, using the novel teaching modality of high fidelity simulation. High risk industries such as aviation and the armed forces have been using this type of simulation as an integral education tool for years and using this form of teaching to train healthcare professionals is becoming increasingly common.AimsThe study aimed to look at what impact high fidelity simulation teaching had on the participants' confidences and their perception of their knowledge and skills in end of life care.MethodThe study used a mixed method approach with a combination of pre and post course focus groups and pre and post course questionnaires. Two separate cohorts were used for this study.ResultsUsing thematic analysis, the focus groups' transcripts were analysed. Free text from the questionnaires was used to support the focus group analysis.ConclusionUsing high fidelity simulation to teach end of life care did have an impact on the participants' confidence, knowledge and skills. Participating in the scenarios was felt to be more beneficial then didactic teaching. This course allowed the study groups to both participate and observe their peers in the scenarios. The facilitated debrief sessions were found to be beneficial and the participants felt they learnt a number of new skills within these sessions from their peers.
Probing the composition of unexposed basement, South Portuguese Zone, southern Iberia: implications for the connections between the Appalachian and Variscan orogens
Authors: Braid James A. , Murphy J. Brendan , Quesada Cecilio , Bickerton Luke , Mortensen James K. 
Published: March 2012

Geochemistry and Sm–Nd and U–Pb (magmatic zircon) isotope data from a postcollisional batholith that crosscuts the allochthonous South Portuguese Zone (SPZ) of southern Iberia suggest that the basement is compositionally more juvenile than the exposed upper crust. The SPZ is an allochthonous terrane of the late Paleozoic Variscan orogen. The oldest exposed units in the SPZ are Late Devonian continental clastics, and as a result, the origins of the SPZ are unknown. Multifaceted inherited zircon cores from a granitoid batholith (Sierra Norte Batholith, SNB) reveal Neoproterozoic (ca. 561–647 Ma) and Mesoproterozoic ages (ca. 1075 – ca. 1116 Ma). Granitoid samples are characterized by εNd values ranging from +1.4 to –9.6 and model ages ca. 0.76–1.8 Ga. Conversely, the exposed Late Devonian clastics of the SPZ are characterized by more negative εNd values (–7.5 to –10.4). Taken together, U–Pb and Sm–Nd data indicate the lower crust that melted to yield the SNB was (i) Neoproterozoic (ca. 560–650 Ma) to Mesoproterozoic (ca. 1.0–1.2 Ga) in age, (ii) was not compositionally similar to the overlying Devono-Carboniferous continental detritus but was instead more juvenile, with model ages between ca. 0.9–1.2 Ga. This unusual relationship is similar to the relationship between the relatively juvenile basement and ancient upper crust documented in the exposed portion of the Meguma terrane in the northern Appalachians, which paleogeographic reconstructions show was immediately outboard of southern Iberia in the Late Devonian.
Whole-Brain Arterial Spin Labeling Perfusion MRI in Patients With Acute Stroke
Authors: Bokkers Reinoud P.H. , Hernandez Daymara A. , Merino José G. , Mirasol Raymond V. , van Osch Matthias J. , Hendrikse Jeroen , Warach Steven , Latour Lawrence L. 
Published: March 2012

Background and Purpose—
Perfusion MRI can be used to identify patients with acute ischemic stroke who may benefit from reperfusion therapies. The risk of nephrogenic systemic fibrosis, however, limits the use of contrast agents. Our objective was to evaluate the ability of arterial spin labeling (ASL), an alternative noninvasive perfusion technique, to detect perfusion deficits compared with dynamic susceptibility contrast (DSC) perfusion imaging.

Methods—
Consecutive patients referred for emergency assessment of suspected acute stroke within a 7-month period were imaged with both ASL and DSC perfusion MRI. Images were interpreted in a random order by 2 experts blinded to clinical information for image quality, presence of perfusion deficits, and diffusion–perfusion mismatches.

Results—

One hundred fifty-six patients were scanned with a median time of 5.6 hours (range, 3.0–17.7 hours) from last seen normal. Stroke diagnosis was clinically confirmed in 78 patients. ASL and DSC imaging were available in 64 of these patients. A perfusion deficit was detected with DSC in 39 of these patients; ASL detected 32 of these index perfusion deficits, missing 7 lesions. The median volume of the perfusion deficits as determined with DSC was smaller in patients who were evaluated as normal with ASL than in those with a deficit (median [interquartile range], 56 [10–116] versus 114 [41–225] mL;
P
=0.01).

Conclusions—
ASL can depict large perfusion deficits and perfusion–diffusion mismatches in correspondence with DSC. Our findings show that a fast 2½-minute ASL perfusion scan may be adequate for screening patients with acute stroke with contraindications to gadolinium-based contrast agents.