bluuebunny/crossref_metadata_2025_split huggingface dataset:
PALLIATIVE CARE IN THE YOUNG PERSON'S COMMUNITY: SUPPORT FOR SCHOOLS
Authors: Craig F , Kelly P , Boden C , Samuel J 
Published: February 2014

IntroductionBeing part of a school community, where young people develop peer relationships and experience a sense of their value in society, is integral to childhood/young adulthood. Supporting terminally ill young people to maintain a role within this community can be crucial to their overall well –being. Essential to this is the ability of school staff to support their physical and psychological health while in school, yet little is known about the support they require to facilitate this.Aim(s) and method(s)We utilised survey methods to investigate the confidence and support needs of school staff.Results78% of the target population completed the survey. In discussions with students, staff were confident ascertaining concerns about the effect of their condition on schooling and participation in activities, but less confident discussing concerns about illness, death and dying. In discussions with parents, staff were relatively confident exploring concerns the child might have about illness and dying and symptoms they may experience. However, they were less confident discussing the option of the child staying at school. Respondents identified meetings in school with Health Care Professional's, the availability of telephone advice during the school day and written medical plans amongst the most valuable forms of support.Conclusion(s)School staff are confident when talking to parents/students about symptom progression and impact on education, but are uncertain what this means in terms of school participation. HCP's must work directly with schools to provide real-time advice and written plans, to enable our patients to be supported within their school community.
USING ANTHROPOLOGICAL METHODS TO UNDERSTAND STAFF EXPERIENCES OF TERMINAL AGITATION IN A HOSPICE
Authors: Tempest E 
Published: February 2014

IntroductionTerminal agitation is a well recognised phenomenon. Unlike other symptoms at the end of life its pathophysiological basis is not well understood. Its presence may be disputed and it is therefore of interest because of its subjective nature.Aim(s) and method(s)I used auto-ethnography and participant observation to explore how healthcare professionals interpret and manage terminal agitation. The participant observation was conducted on a 17 bedded hospice ward in a large city. The field notes were recorded by hand and the data subsequently coded by theme. Observation stopped when no new themes emerged.Results4 themes emerged. Personal feelings: Agitated patients challenge our confidence in symptom management. Causes: While we only document biomedical causes of agitation staff discuss a wide range of existential causes for individual patients. Management: There is a pressure from relatives and within teams to “do something” when a patient is agitated.Medication may be given for reasons other than undeniable agitation. Discordant narratives:In situations where relatives and staff disagree about the presence or absence of agitation this can often be explained in the context of discordant narratives.Conclusion(s)There is a subjective component to the identification, cause and management of terminal agitation. We should embrace and acknowledge this. As well as being key to the concept of individualised care it is the expression of these ideas that enable health care professionals to understand and therefore manage terminal agitation.
HOME DEATHS ARE MORE COMMON AT WEEKENDS AND HOLIDAY PERIODS AMONG CHILDREN AND YOUNG PEOPLE (CYP) WHO DIE FROM CANCER
Authors: Gao W , Verne J , Davies JM , Peacock J , Gordon E , Morris C , Greenough A , Higginson IJ 
Published: February 2014

IntroductionHealthcare staffing and service levels during weekends and holiday (WH) periods are lower than other periods. It is unclear if such configuration plays a role in place of death (PoD) for CYP cancer deaths. Healthcare staffing and service levels during weekends and holiday (WH) periods are lower than other periods. It is unclear if such configuration plays a role in place of death (PoD) for CYP cancer deaths.Aim(s) and method(s)To evaluate the relationship between CYP cancer deaths during WH periods and PoD. 5,432 CYP cancer deaths (≤24 years) in England in 2001–2010 were extracted from ONS death registration database. The outcome was PoD. WH periods were defined as Saturday or Sunday, two days before or after Christmas, and one day before or after New Year's Day or Easter.ResultsOverall, 30% of CYP cancer deaths occurred in WH periods. Compared to other periods (47.7% [46.2–49.3%], there was a reduced proportion of deaths in hospital during WH periods (−3.5% [−6.4 to −0.6%]), and an increased proportion of home deaths during WH periods (3.5% [0.6–6.3%]). Deaths in other places remained stable regardless of period. Multivariate log-binomial analysis (adjusting for age, gender, cancer site, year of death and deprivation) confirmed that CYP cancer deaths were more likely to occur at home during WH periods than in other periods (PR: 1.06 [1.01–1.12], P=0.017).Conclusion(s)Relatively more CYP cancer deaths occurred at home during WH periods than in other periods, mirroring a decrease in hospital deaths. Further research is needed to understand the reasons for this pattern, particularly the roles of service users' preferences, service provision and care quality. Our results highlight a need for well co-ordinated community palliative and primary care support at WH periods.
ENGAGING MINORITY ETHNIC COMMUNITIES TO IMPROVE ACCESS TO PALLIATIVE CARE: BARRIERS AND STRATEGIES
Authors: Baillie J , Harrop E , Hopewell-Kelly N , Stephens K , Byrne A , Nelson A 
Published: February 2014

IntroductionA growing body of literature highlights that minority ethnic groups are underrepresented in accessing palliative care. The Big Lottery therefore funded one Marie Curie Hospice to employ a keyworker to improve minority ethnic communities' awareness of and engagement with palliative care services.Aim(s) and method(s)Project aim: to evaluate the Marie Curie keyworker project over three years. Presentation aim: to present interim findings from the community engagement work undertaken by the keyworker. University ethical approval was gained and data collection began in November 2012 and is on-going. Semi-structured interviews were undertaken with hospice staff and the keyworker. Focus groups were facilitated with community steering groups and project documents have been analysed. Data were managed in NVivo 10 and analysed thematically.ResultsInterim results demonstrate the links fostered between the keyworker and multiple minority ethnic groups, through community centres, charities, advocacy organisations, and religious groups. Barriers to engaging communities include awareness – minority ethnic communities are often unaware of palliative care; Gatekeeping – individuals in community organisations blocking the keyworker accessing groups. Strategies for engagement include creativity and flexibility – the keyworker attended community celebrations with information about Marie Curie services; Reciprocation – a hospice volunteering project for individuals from minority ethnic communities has been established; Advocacy – offering communities a voice through discussion groups to elicit their understandings of palliative care and perceptions of barriers to accessing services.Conclusion(s)To date the evaluation demonstrates the progress made by the keyworker to engage with, listen to and offer information to minority ethnic communities.
SHARING BAD NEWS: DEVELOPMENT OF AN INTERVENTION TO SUPPORT PATIENTS WITH LUNG CANCER SHARE NEWS OF THEIR CANCER DIAGNOSIS WITH FAMILY MEMBERS AND FRIENDS
Authors: Ewing G , Ngwenya N , Farquhar M , Gilligan D , Bailey S , Benson J , Seymour J 
Published: February 2014

IntroductionMuch research has focussed on breaking bad news (BBN) i.e. on how physicians communicate a cancer diagnosis to patients. There is little understanding of the subsequent process, when patients go home and share bad news (SBN) with family members/friends: a situation faced by 115 people every day in the UK who receive a lung cancer diagnosis.Aim(s) and method(s)To identify key components of an intervention to prepare/support people with sharing news of their lung cancer diagnosis with wider family members/friends. Stage 1: qualitative interviews with 20 patients with lung cancer and 17 family members/friends present at BBN consultations, interviews/focus groups with 41 clinicians to examine experiences with BBN and SBN. Stage 2: workshop with 6 service users, feedback to participating clinicians and interviews to explore feasible intervention strategies. Data digitally recorded, transcribed verbatim. Thematic framework analysis.ResultsPatients and family/friends found sharing bad news difficult and complex and a process that happens over time. A mismatch in perceptions of support with SBN between clinicians and patients indicated need for a pro-active and universal approach to offering support. Six core elements were identified in SBN (people to be told, timing of sharing, information to be told, responsibility for sharing, methods of telling others and reactions of those told).These core components have informed development of a supportive intervention for practice.Conclusion(s)Sharing bad news is a challenging process which is currently largely unsupported. An intervention to support patients with sharing news of a lung cancer diagnosis is highly relevant for palliative care.
HOW DO COMMUNITY NURSES DECIDE WHEN TO USE ANTICIPATORY PRESCRIPTIONS IN END OF LIFE CARE AND WHAT DO THEY WORRY ABOUT? FINDINGS FROM A QUALITATIVE STUDY
Authors: Wilson E , Morbey H , Brown J , Payne S , Seale C , Seymour J 
Published: February 2014

IntroductionIn the UK, a key approach to improving end of life care has been the introduction of ‘anticipatory’ or ‘just in case’ prescriptions (APs). Nurses are often responsible for deciding when to use APs, but little is known about their experiences.Aim(s) and method(s)To examine nurses' decisions, aims and concerns when using APs for patients cared for in the community. An ethnographic study in two UK regions, with community nursing teams and nursing homes. Observations and interviews were conducted with nurses involved in using APs.ResultsObservations (n=83) and interviews (n=61) with community nurses. Nurses identified five ‘conditions’ that needed to be established before they implemented an AP: a) irreversibility; b) no other methods of relief; c) patient unable to take oral medication; d) where the patient was able, they should consent; e) decision had to be independent of demands or request from patient's relatives. By using APs, nurses sought to: enable patients to be ‘comfortable and settled’ by provision of gradual relief of symptoms at the lowest dose possible. They aimed to respond quickly to needs, seeking to avoid hospital admission or medical call out. Nurses sought to ‘do it by the book’, adhering strictly to local prescribing policies and guidelines. Some worried about: distinguishing between pain and agitation, balancing risks of under and over medication and the possibility of hastening death.Conclusion(s)Nurses have a leading role in the administration of APs. Nurses applied consideration and caution to the administration of APs with the expressed aim of relieving symptoms and distress.
FACILITATING A SHIFT TO COMPREHENSIVE CARER-LED ASSESSMENT IN PALLIATIVE HOME CARE: THE CSNAT APPROACH
Authors: Austin L , Ewing G , Grande G 
Published: February 2014

IntroductionThe Carer Support Needs Assessment Tool (CSNAT) is an evidence based tool for comprehensive assessment of carers' needs. Use of the tool in practice requires a shift from informal practitioner-led methods of identifying carers' needs to a carer-led, practitioner-facilitated approach.Aim(s) and method(s)To identify training requirements to enable practitioners to move from practitioner-led to carer-led carer support needs assessment. The CSNAT was implemented in six palliative home care services as part of a stepped wedge cluster trial. Pre-implementation training was provided to practitioners at each site. Qualitative data were obtained on practitioners' experiences of implementing the CSNAT via focus groups, interviews and site visits/contacts (where field notes were made). Ongoing analysis identified challenges in adopting carer-led assessment and was used to revise training materials for subsequent training sessions.ResultsThe CSNAT was often perceived as a ‘form’ representing an ‘add on’ to usual practitioner-led practice. The training was therefore modified to promote the underlying principles of the ‘CSNAT approach’ (i.e. the process of carer-led assessment). The stages of the CSNAT approach comprise: Introducing the CSNAT, Carer's consideration of needs, The Assessment Conversation, Shared Action Plan and Shared Review. Each stage is facilitated by the practitioner, but led by the carer.Conclusion(s)Understanding of the CSNAT approach is fundamental to achieving carer- led assessment and support in palliative home care. The CSNAT approach resources are currently being tested as part of a CSNAT toolkit.
CHALLENGES TO IMPLEMENTING COMPREHENSIVE CARER ASSESSMENT IN PALLIATIVE HOME CARE: FINDINGS FROM A CLUSTER TRIAL
Authors: Ewing G , Austin L , Grande G 
Published: February 2014

IntroductionThe Carer Support Needs Assessment Tool (CSNAT) is evidence based and comprehensive. It helps structure an assessment process that enables carers to consider, express and prioritise support needs, then develop a shared action plan of support with practitioners. Previously reported research shows added benefits from CSNAT use for carers and practitioners.Aim(s) and method(s)To identify factors hindering implementation of CSNAT in palliative home-care to inform CSNAT trial results. CSNAT implementation in six palliative home-care services in a stepped wedge cluster trial to test for improved carer outcomes. CSNAT use was monitored. Qualitative data collection from trial sites on practitioners' experiences of using the tool using field notes (from CSNAT training sessions, post-training feedback, monthly CSNAT ‘champions’ contacts), focus groups/interviews with practitioners and service managers.ResultsUse of the CSNAT was low. Practitioners' main focus and time was on patients' needs. A paradox existed between a policy of ‘being there for the family’ not just the patient, and concerns about doubling workload if carers' needs were also assessed. Distinguishing carers' needs from patients' was problematic during joint assessment visits, particularly relating to carers support needs around patient care eg with managing medicines, areas also discussed with patients. CSNAT was used as an ‘add on’ to usual practitioner-led practice: a form to be completed rather than an integrated carer-led approach. Finally, service structures, procedures and the trial itself presented additional barriers.Conclusion(s)Barriers to CSNAT uncovered in the trial provide key insights into challenges for implementing comprehensive assessment of carer needs in palliative home care.
USE OF HOSPITAL SERVICES AMONG PALLIATIVE OESOPHAGO-GASTRIC CANCER PATIENTS
Authors: Groene O , Taylor A , Cromwell D 
Published: February 2014

IntroductionA high proportion of patients on a palliative care pathway continue to use hospital services or die in hospital, despite calls for increased care in the community. Further research is required to distinguish hospitalisation near end of life for specific disease pathways, since a wide range of factors influence service utilisation and place of death. For oesophago-gastric cancer patients with palliative treatment intent, three treatment options exist: palliative oncological treatment, endoscopic treatment, and best supportive care.Aim(s) and method(s)This study sought to assess health service utilisation of patients diagnosed with oesophago-gastric cancer on a palliative care pathway. Patient data were obtained from the National Oesophago-gastric Cancer Audit and linked to the Hospital Episode Statistics (HES) dataset. For each patient, the method of hospital admission, date and mode of treatment intent was identified.Results8,499 palliative care patients were identified in the linked audit-HES dataset. 4,036 patients had an oncology treatment plan, 1,526 had endoscopic care, and 2,887 had best supportive care. 85.6% who received oncological care were re-admitted to hospital one or more times, in comparison to 76.3% and 50.7% who received endoscopic care and best supportive care respectively (p<0.001). Multivariate analysis suggests a six fold risk (OR 6.2; CI 95% 4.6–8.6) of hospital admissions for patients receiving oncological care, as compared to best supportive care. More than half (50.2%) of patients receiving palliative oncology experienced 4 or more emergency admissions before death.Conclusion(s)This study suggests that palliative treatment decisions must be carefully made with hospital re-admission risk in mind.
PATHWAYS FOR BLOOD AND BOWEL CANCER PATIENTS IN THE LAST YEAR OF LIFE: DESCRIBING INPATIENT CARE PATTERNS USING ROUTINE NATIONAL DATA
Authors: Kane EV , Howell DA , Morris E , Johnson M , Oliver SE 
Published: February 2014

IntroductionThe drive to deliver improved services for patients with cancer has highlighted the need for better information on care patterns. We examined the utility of linking different datasets for this purpose.Aim(s) and method(s)All acute myeloid leukaemia (AML) (ICD10 C92.0, C92.4, C92.5, C93.0, C94.0, C94.2, N=1771), myeloma (C90.0, N=2554) and colorectal cancer (C18-C20, N=18704) deaths in England during 2008 were identified from the National Cancer Data Repository (1990–2008) and linked to inpatient Hospital Episode Statistics. The numbers of admissions and days in hospital per month were calculated by disease type, and the occurrence of each patient's hospital visits relative to the time of death plotted on Gantt charts to show care patterns by consultant specialty.ResultsInpatient durations for those dying within a month of diagnosis were similar across the three cancer types (23 bed-days), while the admission rate was higher for haematological (3 per month) than colorectal cancers (1.7 per month). Patients surviving longer than one month were admitted less often and spent less time in hospital across diseases – however, haematology patients were admitted more frequently and for longer durations than those with colorectal cancer. Gantt charts showed the intensity of inpatient activity, with frequent visits to haematology for AML and myeloma patients and to oncology or surgery for colorectal cancer patients.Conclusion(s)Routine national data provides useful insights into the disease-specific inpatient care patterns associated with AML, myeloma and colorectal cancer during the last year of life.
PROLONGED DWINDLING CHARACTERISES THE ILLNESS TRAJECTORY OF NURSING HOME RESIDENTS AT THE END OF LIFE
Authors: Finucane AM , Stevenson B , Murray SA 
Published: February 2014

IntroductionThree illness trajectories have been identified: (i) a short period of evident decline typically experienced by patients with cancer; (ii) long term limitations with intermittent serious episodes typically experienced by patients with organ failure; and (iii) prolonged dwindling typically experienced by patients with frailty or dementia. An understanding of a patient's illness trajectory facilitates anticipatory care planning and decision-making as end-of-life approaches.Aim(s) and method(s)To determine the dominant illness trajectories of nursing care home residents. As a secondary aim we explored multimorbidity in this group. Data was collected by care home staff with support from community palliative care nurse specialists as part of a larger project to improve palliative care in South Edinburgh care homes.ResultsData concerning 77 residents was collected. The dominant illness trajectory of 90% of residents was characterised by prolonged dwindling. Further analysis revealed that 30% of residents experienced mixed illness trajectories. About half of those with mixed trajectories experienced dementia and cancer while half experienced dementia and organ failure. 67% of residents experienced two or more chronic morbidities. Overall, 78% of deceased residents had dementia.Conclusion(s)The vast majority of nursing home residents experienced prolonged dwindling prior to death. Most had multiple morbidities and high symptom burden. Interventions to improve palliative care in nursing homes need to be modelled on patients who experience prolonged dwindling characterised by dementia and multimorbidity.
AFTER IWANTGREATCARE: SERVICE USER FEEDBACK AS A MEANS OF REFINING THE IWANTGREATCARE QUESTIONNAIRE
Authors: Bowyer A , Finlay I , Byrne A , McCarthy J , Sampson C , Snow V , Nelson A 
Published: February 2014

IntroductionIn 2009 the Palliative Care Implementation Board developed a survey to evaluate palliative care service provision in Wales. Through the use of the iWantGreatCare platform patients and carers, from inpatient and community settings, are able to share their experiences of care through 10 likert scales and a free-text section. Subsequently, qualitative analysis of the comments of patients and carers has highlighted areas of care not fully assessed in the scored results. Accordingly, this project now aims to use the qualitative findings to refine and test the questionnaire to ascertain whether the new iteration accommodates service users' priorities and concerns, whilst being pertinent and understandable.Aim(s) and method(s)Ethical approvals were gained in August 2013. The refined questionnaire was developed through an expert consensus day and is now being tested using semi-structured, cognitive interviews with patients (n=10) and carers (n=10) using palliative care services at two hospices in South Wales. The research sites aim to give a multifaceted insight in to the efficacy of the new questionnaire by gathering information from inpatient and community participants. Transcripts from interviews are being analysed thematically.ResultsIt is expected that the interviews will highlight minor areas for change within the questionnaire, while also providing a broader insight into the experiences of patients using community and inpatient palliative care services.Conclusion(s)Study results will be presented to the Palliative Care Implementation Board for their consideration and potential adaptation of the existing questionnaire.