bluuebunny/crossref_metadata_2025_split huggingface dataset:
FAMILY CARERS' DELIVERY OF MEDICATIONS FOR THE PERSON DYING AT HOME: PRELIMINARY FINDINGS FROM THE ‘UNPACKING THE HOME’ STUDY
Authors: Turner M , Seamark D , Milligan C , Thomas C , Brearley S G , Wang X , Blake S , Payne S 
Published: February 2013

IntroductionCurrent UK health policy aims to increase the numbers of people dying at home, but it relies on family members being available to take responsibility for caring. The ‘Unpacking the home’ study elicited the views and experiences of family carers who have cared for a dying family member at home.Aims and MethodsThis paper examines a key element of carers' responsibilities: the administration of medications. Using a multidisciplinary social science approach, qualitative interviews were undertaken with 59 family carers in the north and south of England. The interviews were analysed thematically, and a subset of 30 interviews also underwent narrative analysis.ResultsAlthough some support with medications is provided by healthcare staff in the community, family carers take primary responsibility for drug administration and they identified a number of important issues. They reported anxiety about giving correct and timely dosages, and concerns about keeping their loved ones comfortable without overdosing or shortening their lives. For some, medications (especially opioids) have symbolic significance, and increasing analgesia signifies that the patient is approaching death.ConclusionsFamily carers require adequate information about drugs and their effects, and support in administering medications for a dying person. There is potentially a greater role for pharmacists in managing medications at the end of life, which would be of benefit to doctors and nurses as well as dying patients and their carers.
VARIATION IN THE CARE OF BLOOD AND BOWEL CANCER PATIENTS AT THE END OF LIFE: FEASIBILITY OF USING HOSPITAL EPISODE STATISTICS TO EXAMINE NATIONAL PATTERNS
Authors: Kane E V , Morris E , Bolton E , Wilkinson J , Howell D , Johnson M , McLeod U , Oliver S E 
Published: February 2013

IntroductionPeople dying from haematological cancer are more likely to do so in hospital than is the case for other cancers. We are assessing the utility of data linkage to provide insights into this and other patterns in end of life care, contrasting these malignancies with colorectal cancer.Aims and MethodsTo explore secondary care patterns in the last year of life, we assessed linkage between mortality data and Hospital Episode Statistics (HES) inpatient records. Deaths from haematological and colorectal cancers in England in 2008 were identified from national death registrations and linked to cancer registration and HES inpatient data. Sex, age and place of death distributions were compared.ResultsNinety percent of 9952 persons who died from haematological cancer and 85% of 13 040 persons who died from colorectal cancer were linked to hospital admissions in the last year of life. More men (55%) than women died from both these cancers and over 80% of deaths occurred in those aged over 65yrs. More haematological than colorectal cancer deaths occurred in hospital (64% vs 38%), and fewer at home (17% vs 28%) or in a hospice (10% vs 19%). Similar distributions by sex, age and place of death were found among persons with a hospital admission in the last year of life.ConclusionsLinkage of national mortality data to HES records was largely comprehensive and representative of all deaths from these cancers. This national linked dataset will support further exploration of differences in healthcare activity between these cancers at the end of life.
ARE PALLIATIVE CARE RESEARCH SAMPLES BIASED? RESULTS FROM INTERVIEWS WITH EXPERIENCED PALLIATIVE CARE STAFF
Authors: Preston N J , Payne SJ , Salt S , Griggs A , Rigby J , Parr A , Hennings J 
Published: February 2013

IntroductionThere is evidence that palliative care patients wish to be involved in palliative care research (Terryet al2006) but recruitment proves problematic (Bennett 2010).Aims and MethodsThe purpose of this small study was to understand issues about patient recruitment to research studies in hospice settings from clinicians' and researchers' perspectives. Researchers and clinicians were recruited from various palliative care settings (n=12). Participants were interviewed individually or in pairs using guided questions during June/July 2012. Interviews were recorded, transcribed and content analysis performed.ResultsThe sample included research practitioners (n=3), clinicians (n=7) and professionals with dual research and clinical roles (n=2). Rather than asking all eligible patients, staff practice ‘gatekeeping’, only asking those who fit their ‘ideal participant criteria’. These patients were stereotypically deemed nice, co-operative, chatty and young. Those who tended not to be approached were poorly, emotional, angry or older. However, staff recognised that patients wanted to contribute to research and should be invited. They had experience of patients acting autonomously including those who declined or withdrew from studies so there was some evidence that patients could make these decisions for themselves.ConclusionsThere appears to be an unwritten code to only include those fitting the ideal research participant stereotype. Secondary screening for the ideal participant may create a biased sample and fail to address issues pertinent to all palliative care patients. Such gate keeping also denies patients the potential satisfaction of having contributed to knowledge development.
BREAKING DOWN BARRIERS: EVALUATING A MARIE CURIE HOSPICE PROJECT AIMED AT IMPROVING ACCESS TO PALLIATIVE CARE BY MINORITY ETHNIC GROUPS
Authors: Baillie J , Harrop E , Byrne A , Stephens K , Nelson A 
Published: February 2013

IntroductionGovernment policy within the UK (UK) asserts that all individuals should have access to high quality palliative care. However, there is a growing body of evidence that both internationally and within the UK, individuals from minority ethnic groups are underrepresented in both accessing and using palliative care services (PCS). A hospice within a major city in the UK is attempting to increase minority groups' utilisation of PCS by employing a key worker to engage with local communities. This study aims to inform and evaluate the development and impacts of this project.Aims and MethodsSemi-structured interviews are being undertaken with community members of minority ethnic community groups, community healthcare professionals and hospice staff, which will be repeated at 12 and 30 months. The key worker will also be interviewed at 6 monthly intervals. Ethnicity data collected by the hospice is also being analysed to identify whether there are changes to the uptake of palliative care over time.ResultsEarly data indicates that language and translation remains a concern for both healthcare professionals and members of minority ethnic communities. People from minority ethnic groups were unaware of the hospice services available, while healthcare professionals wanted additional education about the specific beliefs of people from different religious groups at the end of life. Ensuring that hospices have appropriate facilities to support religious needs is vital, especially for prayers.ConclusionsImplications will be identified for palliative care providers interested in finding ways to improve access to palliative care for minority ethnic groups.
BROADENING ACCESS; AN INTEGRATED SPECIALIST NURSE LED PALLIATIVE CARE CLINIC WITHIN A GENERAL PRACTICE SETTING
Authors: Harrop E , Baillie J , Byrne A , Stephens K , Nelson A 
Published: February 2013

IntroductionA community nurse-led palliative care clinic was introduced at a large GP practice in April 2012. This is a new model for engaging patients and GPs with potential for broadening access to palliative care services. Previously clinical nurse specialists (CNS) supported patients by home visits, with the fortnightly clinic introduced as a complementary resource to consolidate the joint primary/ palliative care approach.Aims and MethodsThis study evaluates:▸ Implementation processes▸ The impacts of the clinic on patient experiences and professional practices,▸ The uptake of palliative services▸ The management and delivery of palliative care by GPs and CNS.Baseline interviews with GPs (n=5) and CNS (n=4) were undertaken in February 2012. Patient interviews (n=6–12) and follow-up interviews with GPs (n=6–10) and CNS (n=4–6) are planned for January 2013. Patient interviews will be analysed using Interpretive Phenomenological Analysis methodology, interviews with health professionals will be analysed using Framework Analysis. The evaluation will also report on quantitative data from the palliative care register and patient tracking.ResultsBaseline interview data highlight the need for improved referral and communication practices, especially for non-cancer patients. Aspirations for the clinic included: earlier referral; improved communication and continuity of care; psychological and practical benefits for patients/ carers and more targeted use of specialist nursing resources. Data from patient and follow-up interviews will be reported against these aims, with additional themes identified.ConclusionsConclusions will be drawn on the effectiveness of the clinic and implications identified for palliative care provision in primary care settings, including the potential of such models to broaden access to palliative care.
RECOGNISING THE INFLUENCE OF INTER-PROFESSIONAL RELATIONS ON END OF LIFE CARE TRANSITIONS: VIEWS OF BEREAVED CARERS AND PROFESSIONALS
Authors: Valtorta N , Hanratty B , Lowson E , Grande G , Addington-Hall J , Seymour J , Payne S 
Published: February 2013

IntroductionThe end-of-life care needs of older adults with multiple conditions are complex and involve a range of professionals working in different settings. This study focuses on transitions, as vulnerable points in care pathways experienced by a high proportion of the older population at the end of life.Aims and MethodsTo understand how inter-professional relations influence transitions between settings for older adults at the end of life.MethodsIn-depth qualitative interviews with 118 caregivers of decedents aged 66–98 years, who had died with heart failure, chronic obstructive pulmonary disease, stroke, selected cancers; 43 providers and commissioners of services in primary care, hospital, hospice, social care and ambulance services in England.ResultsCarers regretted that communication and handovers between professionals did not always take place where they felt them to be necessary, and perceived frequent, repeated assessments and interventions to be the consequence. Families felt compelled to take responsibility themselves and fill gaps left by deficiencies in inter-professional communication and working. Professionals described stereotypical divisions between health and social care, with differences in culture, language and approaches to patients or clients. The dominance of the medical model in end of life care was perceived to be unhelpful in creating close working relationships between health and social care. The impact of inter-professional tensions on patients and families went unacknowledged by staff.ConclusionsInter-professional relationships are an important influence on patient and family experiences of end of life care. It may be an overlooked source of inequity.
AN EVALUATION OF THE MARIE CURIE HELPER SERVICE
Authors: Prentice T , Knox A , Bukowski G , Durkacz S , Duxbury K , Quigley A 
Published: February 2013

IntroductionIn 2011 MCCC commissioned Ipsos Mori to conduct an independent, qualitative evaluation of the Helper service; a volunteer delivered service providing social, emotional and practical support to maximise the wellbeing of terminally ill people and their carers.Aims and MethodsThe aim of the research was to explore perceptions of the service from multiple viewpoints, those of people receiving the Helper service, Helper volunteers, service managers and referrers, in the two pilot sites of Somerset and Nottingham. The fieldwork took place between November 2011 and February 2012 and consisted of depth interviews and focus group sessions. In total, nine interviews took place with terminally ill people and eight interviews with carers currently using the service. The interviews were recorded, transcribed verbatim and analysed thematically. Themes were identified across the audiences and content from the transcripts grouped together within each theme.ResultsFive key themes were identified under which findings were grouped. These were:▸ Benefits and factors for success▸ Understanding and expectations for the service▸ Service delivery▸ Challenges facing the service▸ Future developmentConclusionsThe findings suggested that emotional support, companionship, practical support, carer respite and information provision is making a real difference to terminally ill people by having a positive impact on their emotional wellbeing. Carers reported similar direct benefits on their emotional health but also benefited simply from knowing that the emotional needs of the person they were caring for were being met.
AN INTRODUCTION TO BRIGHTLIGHT ON END OF LIFE CARE FOR YOUNG ADULTS: WHAT DO YOUNG ADULTS WITH CANCER AND THEIR FAMILIES NEED AND HOW CAN IT BEST BE DELIVERED?
Authors: Whelan J , Pearce S , Jones L , Stirling C , Hough R , Riley V , Fern L , Morris S , Moran T , Tookman A , Flatley M , Wong G , Taylor R , Gibson F 
Published: February 2013

IntroductionThe end of life care needs of young adults, aged 16–40 years, are poorly described in current literature and no specific guidance exists for professionals that takes account of factors such as rarity, cancer type, heterogeneity and influence of life stage.Aims and MethodsWe will use using realistic evaluation to understand:A. Core components in pathways of care in the last year of life for people with cancer aged 16–40 years.B. How young adults and their families can be supported to achieve their preferences for care.C. Challenges for health and social care professionals.Work commences in 2013 and is linked to quantitative data from NIHR national programme, BRIGHTLIGHT (http://www.brightlightstudy.com). Research will be conducted in three or more sites across UK and includes patients, families and multiple professional disciplines as participants, shaping investigation and outputs.There are five phases:1. Drawing together literature and national cancer intelligence;2. Interviews with young adults, families and professionals;3. Scenario workshops with families and professionals;4. Analysis and interpretation of data including refinement through discussion with a panel of experts;5. Development of recommendations for practice.ResultsFindings from BRIGHTLIGHT will be synthesised with our emerging qualitative data to inform explanations on needs and preferences for care in young adults and their families as the project progresses.ConclusionsThis innovative, comprehensive study of the end of life needs of young adults aged 16–40 years uses in-depth, multi-layered data which will inform understanding of need and inform policy and service delivery.
HOW REPRESENTATIVE ARE PATIENTS WHO ACCESS THE MARIE CURIE NURSING SERVICE OF THE POPULATION OF PEOPLE WHO DIE EACH YEAR IN ENGLAND?
Authors: Georghiou T , Cooke M , Bardsley M 
Published: February 2013

IntroductionThe Marie Curie Nursing Service (MCNS) provides nursing care and support to around 28 000 people at the end of life in their own homes each year.Aims and MethodsThis study aimed to explore the extent to which MCNS patients are representative of all people at the end of life. Following approval from the National Information Governing Board and pseudonymisation of datasets, service data for 29 000 MCNS patients who received care between January 2009 and November 2011 were linked to NHS data on patient characteristics and hospital usage. A comparison group comprised 870 000 people who died during the same timeframe but did not receive MCNS care.ResultsMultivariate analyses explored the extent to which the groups differed on demographic measures including age, gender, ethnicity and deprivation. Further analyses explored the differences in clinical variables including diagnoses and number of long term conditions. MCNS patients were much more likely to have a cancer diagnosis, and are considerably less likely to have a dementia diagnosis.ConclusionsThe largest differences between MCNS patients and the population of people who die each year in England are in diagnostic variables, including cancer history. Multivariate analyses enable a meaningful comparison between the groups of variables of interest (eg, age), accounting for other factors known to be related to that variable (eg, cancer history).
PATIENTS AND CARERS EXPERIENCE OF LIVING WITH A COMPLEX AND RARE NEUROLOGICAL AND PALLIATIVE DIAGNOSIS
Authors: Day Emma R , Garrood Liz , Draper A M , Smith P 
Published: February 2013

IntroductionA growing body of literature suggests that living with a complex, rare and/ or progressive neurological condition can have significant impact on a patient and families/ carer psychological and emotional wellbeing (McLeod and Clarke 2009). Many patients are invisible to the health care system (Day 2012). Leventhal's Self Regulation theory will underpin understanding of the coping strategies adopted. Leventhal and proponents of this theory suggest that we are active participants in our health care (Leventhal, 2003, Helder 2002). Therefore, if we are able to recognise patients' illness representations we can better coordinate care to suit those who receive it. Bowen's Family Systems Theory will be referenced when discussing the experience of the patients' nominated family member.Aims and MethodsTo investigate the patient and carers experience(s) of living with a complex neurological and palliative diagnosis. Secondary data was used from the analysis of the service evaluation study of the ‘My Needs Now’ project hosted by Hertfordshire Community Healthcare Trust.ResultsA number of themes emerged namely, Professional Knowledge and Understanding, Time and Progression, The Family, and Coping Strategies. It is apparent that health professionals need to develop their specific knowledge about complex, neurological and palliative diagnoses and engage with patients and carers as individual cases distributing knowledge appropriately. Whilst patients and carers must adopt a range of coping strategies allowing them to both reactively and proactively engage with support over the course of the disease.ConclusionsHealth professionals should facilitate the development of knowledge with any patient or carer who wishes to expand their understanding of the disease they are living with. Similarly, the duality of knowledge between patient and carer should be respected and the desire for information must never be assumed.
A MISMATCH OF EXPECTATIONS? POWER, HIERARCHY AND THE INTERACTION BETWEEN CLINICAL STAFF AND THE OLDER PERSON APPROACHING END-OF-LIFE AND THEIR OLDER LOVED ONES
Authors: Dobbs C , Carnes Chichlowska S 
Published: February 2013

IntroductionThis paper presents findings from part of a larger qualitative study involving (1) older people, (2) clinical staff, (3) multi-faith spiritual mentors and (4) policy-makers/-influencers in Wales (N=56).1Aims and MethodsTaking a whole-systems approach, a major aim was to identify older peoples' expectations of first-class end-of-life care in the hospital setting. Phase 1 comprised in-depth interviews (participant groups 1–3). Phase 2 involved consultation workshops with older people. In Phase 3, policy-makers/influencers developed road-maps for change during summative consultation workshops.ResultsThe hospital hierarchy plays an immense role for the older patient/loved one. A minority experienced excessive frustration when striving to obtain optimal care. Many remained voiceless due to fear of repercussions. Importantly, for the majority there appeared to be a conflict in wanting to comply to the system as best they could, but were unsure of what the modern NHS expects from them.ConclusionsThere is a bias in the health-care system, particularly whereactualpreferences are age- and/or culturally/faith defined. We question how the NHS putspatient-centred careandpatient choiceinto practice. Whilst hierarchy and (mis-)use of power between and within clinical staff groups is a deep-rooted cultural issue, we conclude that the older person approaching end-of-life and their loved ones have, in many cases, different expectations to clinical staff. The patient is tasked with meeting NHS needs, rather than the NHS meeting the patient's needs. 1. Dobbs C.et al.(Final Report under review)End-of-life-care for older people in Wales. NISCHR Grant No. HA09/006.
Inhibition of SRC Corrects GM-CSF Hypersensitivity That Underlies Juvenile Myelomonocytic Leukemia
Authors: Bunda Severa , Kang Michelle W. , Sybingco Stephanie S. , Weng Julie , Favre Helene , Shin Danielle H. , Irwin Meredith S. , Loh Mignon L. , Ohh Michael 
Published: February 2013

Abstract
Juvenile myelomonocytic leukemia (JMML) is an aggressive myeloproliferative neoplasm in children characterized by the overproduction of monocytic cells that infiltrate the spleen, lung, and liver. JMML remains a disease for which few curative therapies are available other than myeloablative hematopoietic stem cell transplant (HSCT); however, relapse remains a major cause of treatment failure and the long-term morbidities of HSCT for survivors are substantial. A hallmark feature of JMML is acquired hypersensitivity by clonal myeloid progenitor cells to granulocyte macrophage-colony stimulating factor (GM-CSF) via a largely unknown mechanism. Here, we identify c-Cbl (henceforth referred to as Cbl) as a GM-CSF receptor (GMR) adaptor protein that targets Src for ubiquitin-mediated destruction upon GM-CSF stimulation and show that a loss of negative regulation of Src is pivotal in the hyperactivation of GMR signaling in Cbl-mutated JMML cells. Notably, dasatinib, an U.S. Food and Drug Administration–approved multikinase inhibitor that also targets Src family, dramatically attenuated the spontaneous and GM-CSF-induced hypersensitive growth phenotype of mononuclear cells from peripheral blood and bone marrow collected from JMML patients harboring Cbl or other known JMML-associated mutations. These findings reveal Src kinase as a critical oncogenic driver underlying JMML. Cancer Res; 73(8); 2540–50. ©2013 AACR.
Response Classification Based on a Minimal Model of Glioblastoma Growth Is Prognostic for Clinical Outcomes and Distinguishes Progression from Pseudoprogression
Authors: Neal Maxwell Lewis , Trister Andrew D. , Ahn Sunyoung , Baldock Anne , Bridge Carly A. , Guyman Laura , Lange Jordan , Sodt Rita , Cloke Tyler , Lai Albert , Cloughesy Timothy F. , Mrugala Maciej M. , Rockhill Jason K. , Rockne Russell C. , Swanson Kristin R. 
Published: February 2013

Abstract
Glioblastoma multiforme is the most aggressive type of primary brain tumor. Glioblastoma growth dynamics vary widely across patients, making it difficult to accurately gauge their response to treatment. We developed a model-based metric of therapy response called Days Gained that accounts for this heterogeneity. Here, we show in 63 newly diagnosed patients with glioblastoma that Days Gained scores from a simple glioblastoma growth model computed at the time of the first postradiotherapy MRI scan are prognostic for time to tumor recurrence and overall patient survival. After radiation treatment, Days Gained also distinguished patients with pseudoprogression from those with true progression. Because Days Gained scores can be easily computed with routinely available clinical imaging devices, this model offers immediate potential to be used in ongoing prospective studies. Cancer Res; 73(10); 2976–86. ©2013 AACR.