bluuebunny/crossref_metadata_2025_split huggingface dataset:
A qualitative exploration of patient and carer perspectives on pancreatic exocrine insufficiency due to pancreatic cancer
Authors: Muircroft Wendy , Gooden Helen , Collier Aileen , Carey Sharon , Gott Merryn , Currow David 
Published: August 2016

Pancreatic exocrine insufficiency (PEI) is a condition that commonly occurs due to pancreatic cancer and is known to cause weight loss and have a negative impact upon quality of life. The purpose of this qualitative study is to explore patient and carer perspectives on the experience of PEI in pancreatic cancer and gain a better understanding of the implications of treatment.Semi-structured interviews were conducted with 14 patients and 9 carers recruited from palliative care and medical oncology services in the Adelaide region. Sampling continued until saturation of key themes. A critical thematic analysis was conducted.The study findings corroborated the findings from a previous study in quality of life and pancreatic cancer1and also extended clinical knowledge on the impact of the symptoms that patients and carers described. The presence and severity of PEI may be underestimated by using the presence of weight loss, steatorrhoea and abdominal pain to the clinical syndrome of PEI. Where patients and carers described treatment failure with pancreatic enzyme replacement therapy, new findings gave explanations for this.The results from this study suggest that further research needs to be done to compare the traditional clinical model assessing the presence of PEI in pancreatic cancer with a systematic approach to evaluation to increase the accuracy of clinical diagnosis, accessibility of treatment and monitoring of therapy.ReferenceGooden HM, White KJ.Pancreatic cancer and supportive care – pancreatic exocrine insufficiency negatively impacts on quality of life.Support Care Cancer2013;27(7):1835–1841
‘Go home with your family and a lot of kit, and we’ll leave you to it’: perceptions of out of hours care by the PeolcPSP respondents
Authors: Nelson Annmarie , Godwin Jordan Van , Sivell Stephanie , Byrne Anthony 
Published: August 2016

IntroductionOut of hours care was the top concern of the 1403 respondents to the PeolcPSP. The respondents of the PeolcPSP were asked to answer big questions. In return, they gave big answers often with highly personal narrative accounts in illustration of their concerns.Aim(s) and method(s)We undertook a supplementary thematic analysis as a valuable opportunity to explore the uncertainties, questions and experiences of respondents to supplement the interventional questions taken forward by the PeolcPSP.ResultsSurvey respondents talked about the need for 24 hour and out of hours care. Most of these responses consider access to good quality home care support and services to be a key priority. In particular, respondents struggled to understand why services were restricted outside normal working hours and expressed anger and frustration. Emergency admissions for crisis care, as the only option, were discussed frequently. The results are categorised by themes and sub themes:(Lack of) support out of hoursQuality of supportCommunity servicesHospice at homeTelephone support networkEmergency care and rapid responseEmergency care at the end of lifeCoordination of out of hours emergency servicesDealing with crisis admissionsConclusion(s)The results of the supplementary analysis expand the findings of the PeolcPSP and further reinforce the call for further investment in out of hours services, and palliative care research, including societal aspects of living with a terminal illness and end of life.The dual approach of the PeolcPSP protocol and a thematic approach can appropriately explore the entire dataset in recognition of the time and personal effort given by the survey respondents.ReferenceBest S, Tate T, Noble B,et al. The Palliative and End of Life Care Priority Setting Partnership (PEOLCPSP): Determining evidence uncertainties from the perspective of the end user of research.BMJ Support Palliat Care2014;4:A42. doi:10.1136/bmjspcare-2014-000654.117
How should compassion be conceived and enacted in end of life care? A patient perspective
Authors: Palfrey Hannah , Armour Kathy , Grubb Rachel , Ives Jonathan 
Published: August 2016

BackgroundAs agency and capacity decline towards the end of life, compassion becomes an increasingly important and apposite feature of healthcare. Whilst more compassionate healthcare is being called for, especially in end of life contexts, there is relatively little understanding of what compassion actually is, or how it can be enacted.AimTo conduct an empirical bioethics analysis to explore the concept of compassion and how this is understood by patients, in order to inform an ethical analysis of how compassion ought to be conceived and performed in end of life care (EOLC).MethodsAn exploratory qualitative approach underpinned by Frith’s Symbiotic Empirical Ethics methodology was used. Six semi-structured interviews were conducted in a UK hospice.Results and discussionCompassion was conceived in different ways by different participants, but 6 key themes emerged that patient’s identified as essential to a compassionate experience: ‘caring motivation’, ‘attentive acts’, ‘caring what I care about’, ‘being relational’, ‘response to suffering’ and ‘time.’However, these themes are not all compatible. Consequently, each constituent of compassion was explored; examining whether each was necessary for an acceptable definition of compassion. From this analysis, a conceptualisation of compassion in EOLC was developed that focuses on compassion being relational, centred on performing attentive individualistic acts.ConclusionCompassionate care should be based on an individual patient’s needs, and this study acts as a reminder that compassionate acts need not be lengthy. Moreover, compassion is a holistic concept, should be treated as such. Finally, through attentive practice, compassion can be ‘learned’.ReferencesBramley L, Matiti M. How does it really feel to be in my shoes? Patients’ experiences of compassion within nursing care and their perceptions of developing compassionate nurses.J Clin Nurs2014;23(19–20):2790–2799Dewar B, Adamson E, Smith S,et al. Clarifying misconceptions about compassionate care.J Adv Nurs2013;70(8): 1738–1747Frith L. Symbiotic empirical ethics: a practical methodology.Bioethics2012;26(4):198–206Wenrich MD, Curtis JR, Ambrozy DA,et al.Dying patients’ need for emotional support and care from physicians: perspectives of patients with terminal illness, families, and health care providers.J Pain Symptom Manage2003;25(3):236–246
Unpublished studies in a palliative care systematic review: a case study
Authors: Vickerstaff Victoria , Jones Louise , Larkin Philip , Stone Paddy , Candy Bridget 
Published: August 2016

IntroductionPublished literature provides only limited and possibly selective knowledge (Chanet al., 2014; Ionnidis, 2014). We are updating a Cochrane systematic review on mu-opioids antagonistic for bowel dysfunction in palliative and cancer patients in which we hope to include all relevant literature, including unpublished results. We have identified several trials where it is not known whether the study has been completed and/or whether the results are available. Including the results from these unpublished studies is in the interest of patients, doctors and the pharmaceutical industry. Furthermore, it is an important ethical issue.AimTo obtain unpublished results.MethodsWe sought contact with the authors and trial sponsors for the 13 trials we identified with no published data. We also searched regulatory drug reports of these trials.ResultsTwo of the six drug companies approached responded to our letter. After inspecting the review protocol, one company stated that they were unable to give us the requested information as they disagreed with our choice of participants. A second company agreed to meet to discuss their work. They directed us to a relevant poster available on the company website and stated that they planned to write-up the trial. Responses from authors of studies not sponsored by drug companies were easier to obtain.ConclusionFrom trial registers and published protocols we have been able to identify many unpublished trials. Contacting the authors and companies is challenging. However, it is important to try to obtain unpublished trial reports to complete the evidence and reduce publication bias.ReferencesChan AW, Song F, Vickers A,et al. Increasing value and reducing waste: addressing inaccessible research.The Lancet2014;383(9913):257–266Ioannidis JP. Clinical trials: what a waste.BMJ2014;349:7089
Evaluate the improved value that NHS 111 can provide to palliative care patients and their families by utilising specialist palliative care nurses within urgent and emergency care
Authors: Bradley Alison , Littlewood-Prince Michela , Kaushal Usha , Mitchell Kathryn , Leyland Claire , Wanstall Judith , Cooper Nicholas 
Published: August 2016

IntroductionNHS111 Yorkshire and Humber, using the 4C’s framework to review Concerns, Complaints, Compliments and Comments became aware of issues regarding ‘delays’ to care for palliative care patients. We conducted a systematic review of palliative care services to identify areas for improvement.AimsTo improve the value that NHS111 could provide to palliative care patients by understanding pathways for palliative care, testing the use of specialist palliative resources, developing ideas for technology developments, enhancing access to medicines through the use of pharmacists and to understand how NHS111 can work to enhance out-of-hours palliative care services in the region.MethodsIntelligence was gathered to identify the current position to support palliative patients. Interventions were designed to provide new and improved ways of working. Palliative Nurses were employed for 5-weeks during out-of-hours and training provided to the wider healthcare team.ResultsAnalysis of the results allowed further improvements to the provision of 24-hour care and out-of-hours provision. Higher levels of demand were experienced during weekend hours and at the start of a Bank Holiday periods. Palliative Care Nurses were also able to provide high levels of self-care’ advice without requiring onward referral.ConclusionsWe directly identified empirical evidence and delivered a range of benefits which support the ‘Dying without Dignity’ report and provided recommendations to directly address the issues of poor symptom control, inadequate out of hour’s service and poor care planning.Furthermore Training and Development for NHS 111 staff in palliative care matters was further enhanced with the development of a palliative care e-learning package.ReferencesKeogh B. Transforming urgent and emergency care services in EnglandNHS The Five Year Forward View; 2014NHS EnglandNHS 111 Learning & Development Programme – Phase 2; 2014Dying without dignity. Investigations by the Parliamentary and Health Service Ombudsman into complaints about end of life care. [online] Ombudsman service; 2015. Available at:http://www.ombudsman.org.uk/__data/assets/pdf_file/0019/32167/Dying_without_dignity_report.pdf[Accessed 7 Jun. 2016]Willett K. Pharmacy and the urgent and emergency care review, 2014
Are patients who are rejected for a liver transplantation referred to palliative care?
Authors: Stewart Molly , Speakman John 
Published: August 2016

ObjectivesThe primary objective was to assess whether a referral to palliative care was made in a sample of end-stage liver disease (ESLD) patients, turned down for a liver transplant, due to being too sick or having a malignancy that excludes them.The secondary objective was to record the outcomes of: demographics, diagnosis, age when rejected for a liver transplant, length of survival post-rejection for a liver transplant, age at death and place of death.MethodsA retrospective service evaluation of 48 ESLD patients who were rejected for a liver transplant at the Queen Elizabeth Hospital Birmingham (QEHB), due to either being too sick or the liver tumour being inoperable.ResultsOf the 48 patients included in the service evaluation, there were a total of 12 referrals (25%) made to palliative care. The most common diagnoses were alcohol-induced cirrhosis (25%), followed by non-alcoholic steatohepatitis (16.7%), Hepatitis C (10.4%) and cryptogenic cirrhosis (10.4%). The mean age at transplant assessment was 59 years old and the mean age at death was 60 years old. The mean length of survival following rejection for a transplant was 72 days. The place of death was difficult to determine for many of the patients due to technology constraints.ConclusionBetter integration of palliative care and liver transplant services is needed to ensure that patients with ESLD are supported in order to ensure the best quality and quantity of life.ReferencesKendrick E. Getting it right: improving end of life care for people with liver disease. North East: Department Of Health; 2014Deaths Registered In England and Wales in2010, by cause. London: Office Of National Statistics; 2011Effiong K, Osinowo A, Pring A, Verne J. Deaths from liver disease: Implications for end of life care in England. National end of life care intelligence network 2012Kaner E, Newbury-Birch D, Avery L, Jackson K, Brown N, Mason H. A rapid review of liver disease epidemiology, treatment and service provision in England. Institute for Health and Society, Newcastle University; 2007Wood A, Arthur C, Myatt R, Sargeant I. Role 4 Trauma Fellowship: The Military Registrar’s Training Experience.Arthroscopy2012;3:2Adam SJ. Palliative care for patients with a failed liver transplant.Intensive and Critical Care Nursing2000;16(6):396–402Larson AM, Curtis JR. Integrating palliative care for liver transplant candidates: ‘too well for transplant, too sick for life’.JAMA2006;295(18):2168–2176Back AL, Arnold RM, Quill TE. Hope for the best, and prepare for the worst.Ann Intern Med2003;138(5):439–443Saunders DC. First national VOICES survey of bereaved people: key findings report, 2012
How far can we trust proxy respondents for patients receiving supportive and palliative care who are unable to consent to research?
Authors: Bailey Cara , Kinghorn Philip , Orlando Rosanna , Armour Kathy , Perry Rachel , Jones Louise , Coast Joanna 
Published: August 2016

IntroductionPatients near the end of life are not always able to consent to research participation but it is important they have the opportunity to be represented. Proxies may offer a valuable perspective on the quality of end of life care. Although there is evidence that proxy responses differ, exploring why and where differences occur may help in deciding on their use in empirical studies.AimWhat is the agreement on quality of life outcome questions between patients receiving supportive care and proxy response by close persons (CPs) and healthcare professionals (HCPs)?MethodsA mixed methods study was conducted with 72 participants recruited via the hospice (33 patients, 22 CPs and 17 HCPs). Participants completed three quality of life outcome scales (ICECAP-SCM, EQ-5D-5L and ICECAP-A) during think-aloud interviews. Analysis explored difficulties and enablers for proxy completion. Constant comparison and extreme case analysis explored how CPs and HCPs completed the scales on behalf of patients.ResultsProxy responses depend on how well the proxy knows the patient but there is no clear difference between proxy roles. Choice and dignity are more accurately completed by proxies than physical or emotional suffering. This may be related to the relationship between the patient and proxy and willingness to discuss care planning preferences.ConclusionThis study has important implications for research and practice. Accurate measurements of the quality of end of life care from the patient perspective is essential, especially as the provision of 24/7 palliative care becomes the priority.
A qualitative exploration of the lived experience of inpatients receiving support from the hospital specialist palliative care team (HSPCT), in one acute hospital setting
Authors: Black Anne , Mayland Catriona , McGlinchey Tamsin , Gambles Maureen , Ellershaw John 
Published: August 2016

BackgroundThe importance of person centred care has been dominant in End of Life Care (EoLC) national guidance since publication of the EoLC Strategy in 2008. However, variations in quality of care remain concerning. National frameworks have been developed to enable care providers to drive changes to improve patient care and experience (NPELCP 2015). It is therefore important to explore what patients and those close to them think about services they encounter; it is widely recommended that engaging with service users should inform ongoing service improvement strategies.AimIn one acute hospital trust:Explore the lived experience of being a hospital inpatient, and receiving support from the HSPCT;Make recommendations to the acute trust regarding improving patient experience.MethodA phenomenological approach was adopted utilising the following methods:Narrative Interviews – In-depth interviews with recently discharged palliative patients;Case note review – key documentation from recent in-patient episode.Results20 interviews completed. Qualitative data analysis is currently being undertaken using Thematic Analysis. Initial emerging themes identify the following:Modes of communication impact on perceptions of care;Levels of understanding affect perceptions of control and loss of self;Burden of symptoms impact on patients holistic wellbeing/quality of life;Institutional culture and prior experiences may exacerbate feelings of concern.ConclusionStudy findings will contribute to a greater understanding of the inpatient experience within the acute hospital setting, as well as provide information directly to the acute trust to promote local change and improvements to care delivery.ReferenceNational Palliative and End of Life Care Partnership (NPELCP). Ambitions for Palliative and End of Life Care: a national framework for local action; 2015.http://endoflifecareambitions.org.uk/. Accessed June 17, 2016
A QUALITATIVE INVESTIGATION INTO PARAMEDICS' THOUGHTS ABOUT THE INTRODUCTION OF NATIONAL EARLY WARNING SCORES
Authors: McClelland Graham , Haworth Daniel 
Published: August 2016

BackgroundThe National Early Warning Score (NEWS) is a simple, rapid assessment tool developed by the Royal College of Physicians to standardise the assessment and monitoring of acutely ill patients and facilitate communication across settings. Ambulance Service introduced NEWS in 2013/14. Previous work in this area showed that paramedics were not using NEWS in practice so this study explored the reasons why and how paramedics use, or don't use, NEWS in practice.MethodsQualitative study using a pragmatic approach. Semi-structured interviews were conducted on a purposive volunteer sample of 8 paramedics with a range of roles, locations and lengths of service. Interviews were digitally recorded and transcribed for analysis. Five stage framework analysis commenced in parallel with data collection.ResultsTwo main themes emerged from the data. The first theme was when and how paramedics used NEWS in their decision making. All participants thought that they, and their peers, collected all the observations necessary to calculate a NEWS but that it didn't enter their thoughts until after decisions had been made and were being documented. Participants saw NEWS as a tool to support their decisions but also thought NEWS may be beneficial for triggering decisions by non-paramedic ambulance staff.The second theme was how interactions with other healthcare professionals impacted on paramedics' use of NEWS. The reception participants received when handing a NEWS over at hospital had a strong influence on their continuing use of NEWS. The perception that Emergency Department staff weren't interested in NEWS acted as a negative influence on pre-hospital practice apart from one area where the local hospital encouraged the use of NEWS which had a localised positive reinforcing effect.ConclusionsParamedics use NEWS to support rather than trigger decisions. The perceived importance placed on information handed over at hospital influences paramedics pre-hospital practice.
FREQUENT CALLER MANAGEMENT SWASFT
Authors: Morgan Claire , Thayre Shaun 
Published: August 2016

BackgroundA Frequent Caller (FC) to the Ambulance Service, defined nationally by FreCaNN, is an adult (18y+) who makes 5 or more emergency calls a month, or 12 or more in 3 months.The SWASFT FC Team analyse the monthly data following the SWASFT FC Management Policy including multiagency working across Primary Health, Social Care, Police and Housing.This study aimed to establish whether low level FCs (5-9 times/month or ≥12 in 3 months) were a warning marker for future high level FCs (>10 times/month) and if the management of these callers by a Frequent Caller Lead (FCL) reduced call volume.This study analysed 425 high level Frequent Callers.MethodSouth Hub: The FCL collected data from Jan 14–Aug 15 on High Level FCs to identify if patients were recorded as low level FCs in the 6 months previous. The 6 months following the recording of a high level FC was also examined to measure the benefit of managing these patients.North Hub: The FCL was not appointed until September 2015, thus providing a control group.Results▸ Low Level 999 FCs do not necessarily become a High Level FCs (table 1).▸ Managing High Level FCs shows a reduction in call volume, with many ceasing to call (table 2).▸ The average call volume for FCs to the South Hub (managed) was lower than that to the North Hub (unmanaged) (table 3).Table 1Categorisation of call volume before becoming High Level FCN%Non frequent caller (<5)26862Low level frequent caller (5–9)16138Table 2Categorisation of call volume after becoming High Level FCN%Non frequent caller (<5)32777Low level frequent caller (5–9)246High level frequent caller (>10)7417Table 3Volume of FCs Jan 15–Aug 15SouthNorthTotal no of FCs identified26802057Sum of all Calls made by FCs1847317164Average Call Volume per FC6.98.3Conclusions▸ There is no indication that Low Level FCs become High Level FCs.Those calling 5× month, or 12 × in 3 months are therefore not currently being managed proactively.▸ Managing High Level FCs reduces their 999 demand.▸ Evidence has also shown that management of the Entrenched FCs was beneficial as it reduced their call volume.