bluuebunny/crossref_metadata_2025_split huggingface dataset:
End of life care for people with alcohol and other drug problems: an exploratory study
Authors: Galvani  , Tetley Josie , Haigh Carol , Webb Lucy , Yarwood Gemma , Ashby Jo , Witham  , Peacock Marian , Wright Samantha , Templeton Lorna , Duncan Fiona 
Published: August 2016

IntroductionThe problematic use of substances is linked to many forms of chronic and life threatening conditions, the majority of which affect people in later life. In part as a consequence of population ageing and with evidence suggesting that older people’s substance use is increasing, this complex and heterogeneous group is growing. Thus greater numbers will require palliative care and present new challenges to end of life services. This study explores the nature and extent of these changes and the needs of service users and providers.Aim(s) and method(s)There are five strands to the study; evidence for practice: an international review via a Rapid Evidence Assessment (REA), establishing what is known about prevalence and incidence via a secondary analysis of qualitative and quantitative datasets, exploration of the experiences of people with chronic or terminal illness and a similarly for the experiences of family members and carers, and professionals’ perspectives collected via key informant interviews.ResultsThe study began in May 2016 and we will have preliminary findings for presentation from the REA, the quantitative dataset analysis, and the secondary analysis of carer/family study data by October 2016.Conclusion(s)This is a key and under-researched area of palliative and end of life care, and an area which we already know results in considerable challenges for both end of life service providers and also for substance use services. Little is known about what may already be in place and still less about the composition and scale of the relevant populations.ReferencesGalvani S, Hutchinson A, Dance C. Identifying and assessing substance use: findings from a national survey of social work and social care professionals.Br J Social Work2014;44(7):1895–1913Harling M, Overy C, Beckham G,et al. Addressing negative attitudes toward substance use in nursing: A peer-led approach in nurse education.Drugs Alcohol Today2006;62):38–41Reisfield GM, Paulian GD, Wilson GR. Substance use disorders in the palliative care patient.J Palliat Med2009;12(5):475Wadd S, Papadopoulos C. Drinking behaviour and alcohol-related harm amongst older adults: analysis of existing UK datasets.BMC Res Notes2014;7(1):741
Can high fidelity simulation be used to teach communication skills regarding death and dying? A qualitative study
Authors: Hawkins Amy 
Published: August 2016

AimsTo explore medical students’ experiences of communicating with patients and relatives about death and dying and their responses to communication skills training using high-fidelity simulation.MethodsThis qualitative study was carried out at a hospital in the south of England with seven final year medical students. Tutorials were developed using high-fidelity simulation to teach communication skills in discussing cardiopulmonary resuscitation. Scenarios involved a simulated ward environment, a high fidelity mannequin and an actor as the patient’s relative. The scenarios were observed through a video link by other students and a facilitator. Data was collected through joint interviews which were audio recorded and transcribed verbatim, then analysed using framework analysis.ResultsStudents reported few opportunities to observe consultations regarding end of life issues or to interact with dying patients and their relatives. Barriers reported included healthcare professionals’ and patients’ attitudes to students observing consultations about death and dying. This led to a lack of confidence and preparedness to have these conversations as junior doctors. Students reported that the high-fidelity simulation scenarios were more realistic than low-fidelity (role-play) scenarios and improved their preparedness to have conversations about death and dying with patients and families.ConclusionsThis study has suggested that students lack confidence and are underprepared to communicate with patients and relatives about death and dying as junior doctors. High fidelity simulation may be a useful tool for communication skills training, but further studies are needed to explore the feasibility and cost-effectiveness of this teaching method.
“I’ll be in a safe place”: a qualitative study of the decisions taken by people with advanced cancer to seek emergency department care
Authors: Henson Lesley A , Higginson Irene J , Daveson Barbara A , Ellis-Smith Clare , Koffman Jonathan , Morgan Myfanwy , Gao Wei ,   on behalf of BuildCARE
Published: August 2016

ObjectiveTo explore the decisions of people with advanced cancer, and their caregivers, to seek emergency department (ED) care, and understand the issues that influence the decision-making process.DesignQualitative study incorporating semi-structured patient and caregiver interviews, plus research field notes.MethodsBetween December 2014 and July 2015, semi-structured interviews were conducted with 18 people with advanced cancer, all of whom had recently attended the ED of a large university teaching hospital located in south-east London; and six of their caregivers. Interviews were audio-recorded, transcribed verbatim and analysed using a constant comparative approach. Padgett and Brodsky’s modified version of the “Model of Health Services Use” was used as a framework for the study.1ResultsIssues influencing the decision-making process included: i) Anxiety relating to having a diagnosis of cancer – those with greater anxiety interpreted symptoms as more severe and/or requiring immediate attention; ii) Prior patterns of health-seeking behaviour – at times of crisis participants defaulted to previously used services; iii) Feelings of safety and familiarity with the hospital setting – many felt reassured by the presence of healthcare professionals and monitoring of their condition; and, iv) Difficulties accessing community healthcare services – especially urgently and/or out-of-hours.ConclusionThese data provide healthcare professionals and policymakers with a greater understanding of how systems of care may be developed to help reduce end-of-life ED visits. In particular, our findings suggest that greater support and education regarding end-of-life symptoms, earlier collaboration between oncology and palliative care and increased access to community healthcare services may help reduce the number of end-of-life ED visits made by people with advanced cancer.ReferencePadgett DK, Brodsky B.Psychosocial factors influencing nonurgent use of the emergency room – a review of the literature and recommendations for research and improved service delivery.Soc Sci Med1992;35(9):1189–1197
Why do patients with haematological malignancies die in hospital? Qualitative findings from a UK study
Authors: McCaughan Dorothy , Roman Eve , Smith Alex , Howell Debra 
Published: August 2016

IntroductionResearch suggests most people would prefer to die at home,1yet patients with haematological malignancies (leukaemia, lymphoma, myeloma) die in hospital more often than those with other conditions, and there is little evidence to explain this.2–4AimTo explore perceptions about why hospital deaths predominate.MethodsQualitative interviews with 46 clinicians who care for blood cancer patients and 10 relatives of deceased patients. Interviews were audio-taped, transcribed and analysed for thematic content. An inductive approach was used to code and classify data, which included: familiarisation with the data; attribution of individual codes; collating codes into themes; and interpretation by seeking meaning, salience and connections.ResultsHospital deaths are largely determined by the disease characteristics and its trajectory, including: intensive, toxic treatment; propensity for sudden, unexpected deterioration/death; and blurred transitions, where patients “dip up and down”, causing difficulties predicting prognosis and determining when to stop treatment. While haematology staff questioned “the rhetoric that the only good death is a home death’, and recognised that hospital deaths were appropriate and desired by some, others considered home death generally more preferable. Hospital admission/deaths were often precipitated by unrealistic expectations about home death and lack of 24-hour community care to facilitate this.ConclusionThe complex, unpredictable nature of haematological malignancies biases towards hospital deaths. Provision of high quality, hospital-based end-of-life care is essential to patient/caregiver experiences. While some choose to die in hospital, others dying there may have different preferences. Community services should be adequately resourced to enable patients to make meaningful, deliverable choices about their end-of-life care.ReferencesHouse of Commons Health Committee. End of life care: Fifth report of session, 2014–2015. London: The Stationery Office Limited; 2015National Cancer Intelligence Network. Where do patients with blood cancers die? London: Public Health England; 2010Howell DA, Roman E, Cox H,et al. Destined to die in hospital? Systematic review and meta-analysis of place of death in haematological malignancy.BMC Palliat Care2010;9(9):1–8Howell DA, Wang HI, Smith AG,et al. Place of death in haematological malignancy: variations by disease sub-type and time from diagnosis to death.BMC Palliat Care2013;12(42):1–8
Factors associated with hospital death in patients with haematological malignancies: findings from a UK population-based study
Authors: Turner Andrew , Roman Eve , Smith Alex , Howell Debra 
Published: August 2016

IntroductionResearch suggests most people would prefer to die at home, yet patients with haematological malignancies (leukaemia, lymphoma and myeloma) die in hospital more often than people with other conditions, though reasons for this are unclear.2,3AimsTo investigate factors associated with hospital deaths in patients with blood cancers.MethodsThis study is set within the Haematological Malignancy Research Network (www.HMRN.org),4an ongoing population-based cohort that follows patients from diagnosis onwards. All 886 adult patients diagnosed 2004–2012 and dying 2011–2012 were included, with data collected from their medical records.ResultsOver half (56.9%) the 886 patients died in hospital. After adjusting for sex and age, several additional factors remained associated with the likelihood of hospital death (P < 0.05). Patients receiving treatment with life-prolonging/curative intent in the 30 days before death were more likely to have died in hospital compared to those receiving palliative care (OR 3.83, 95% CI: 2.40–6.11). Those with documented discussions about preferred place of care/death were around half as likely to have died in hospital as those without discussions (OR 0.46, 95% CI: 0.35–0.61). Final discussions not involving the patient themselves were also associated with an increased likelihood of hospital death (family only vs patient involvement, OR 2.31 95% CI: 1.50–3.57).ConclusionsHospital deaths were most likely to occur in patients receiving life-prolonging/curative treatment, suggesting death was not anticipated; and when the patient themselves was not involved in discussions, implying advanced illness. This indicates that hospital deaths are often unexpected or unavoidable and that maximising the quality of end-of-life care in hospitals should be a priority.ReferencesHouse of Commons Health Committee.End of life care: fifth report of session, 2014–2015. London: The Stationery Office Limited; 2015National Cancer Intelligence Network.Where do patients with blood cancers die?London: Public Health England, 2010Howell DA, Roman E, Cox H,et al. Destined to die in hospital? Systematic review and meta-analysis of place of death in haematological malignancy.BMC Palliat Care2010;9(9):1–8Smith A, Roman E, Howell DA,et al. The Haematological Malignancy Research Network (HMRN): a new information strategy for population based epidemiology and health service research.Br J Haematol2010;148(5):739–753
How can we facilitate access to palliative care for homeless people? A systematic review of qualitative research
Authors: Hudson Briony F , Flemming Kate , Shulman Caroline , Candy Bridget 
Published: August 2016

IntroductionThe Department of Health (2008) strives to provide palliative care at the time of need for everyone, regardless of “wherever the person may be”, “irrespective of social economic deprivation”. Homeless people face multifaceted challenges in accessing general health care, palliative care access may be additionally challenging. Given the complexities of providing care and support to this population, qualitative research exploring perspectives of homeless people and care providers enhances understanding of the difficulties of palliative care provision to this vulnerable group.AimsTo identify what may facilitate access to palliative care for the homeless population and relate these factors to existing interventions.MethodsA systematic review of qualitative research using methods of thematic synthesis. Six databases were searched using terms to identify qualitative studies exploring perspectives regarding palliative care held by homeless people and/or care providers. Two reviewers completed key review processes.ResultsTwelve articles were included. Core themes relating to the provision of palliative care from the perspectives of homeless people and care providers were identified. Recommendations for the provision of palliative care for homeless people included the importance of the development of trusting relationships, flexible and joined-up services and increased training and support for professionals. International interventions that incorporate these principles in practice are being tested, particularly those that utilise the experiences of formerly homeless people.ConclusionsIncreasing awareness and flexibility may help facilitate access to high-quality palliative care for homeless people and so help to promote dignity and choice for this population as they reach the end of their lives.ReferenceDepartment of Health. End of life care strategy: promoting high quality care for all adults at the end of life; 2008.
Ethnicity affects the experience of family caregivers of people living with severe MS: findings from a cross sectional survey
Authors: Jackson Diana , Goddard Cassie , Gao Wei , Higginson Irene , Silber Eli 
Published: August 2016

BackgroundThe influence of ethnicity on family caregivers (FCG) of people severely affected by multiple sclerosis (PwMS) is unknown.AimTo compare experiences of White British (WB) and Black Caribbean (BC) FCGs of people with severe MS.DesignCross-sectional survey including ratings of caregiver burden and met/unmet needs. Open questions explored the cultural influence on the main effects of caring, its rewards and difficulties, and changes required to improve caregiving experiences.Setting/participantsFCGs of BC and WB PwMS with Expanded Disability Status Scale ≥6 living in London.Results39 FCGs representing 43 BC and 43 WB PwMS were interviewed. 23 WB 14 BC or 2 mixed ethnicity caregivers were recruited. More BC caregivers were females caring for parents/offspring who resided elsewhere. Self-reported caregiver burden was similar across groups. Unmet needs common to both groups included timely access to health/social services, requiring more information about MS and its effects, and greater involvement in planning treatment and care. However, BC FCGs differed from their WB counterparts; they possessed little knowledge of MS, its complications and were more reticent about caring roles which prevented them accessing necessary support. They also reported more financial concerns.ConclusionFCG’s from both ethnic groups required greater responsiveness and support from formal services. We observed issues specific to FCGs of BC PwMS that caused distress. Health professionals must be mindful that those from ethnic groups may possess little knowledge or experience of living with MS and relevant services. They also need to sensitively advise on managing financial issues.ReferencesKoffman JS, Higginson IJ. Fit to care? A comparison of informal caregivers of first-generation Black Caribbeans and White dependants with advanced progressive disease in the UK.Health Soc Care Community2003;11:528–536Koffman J, Gao W, Goddard C,et al. Progression, symptoms and psychosocial concerns among those severely affected by multiple sclerosis: a mixed-methods cross-sectional study of Black Caribbean and White British People.PLoS ONE2013;8:e75431
Evaluation of the effectiveness of music therapy in improving the quality of life of palliative care patients: a randomised controlled pilot and feasibility study
Authors: McConnell Tracey , Graham-Wisener Lisa , Regan Joan , McKeown Miriam , Kirkwood Jenny , Hughes Naomi , Clarke Mike , Leitch Janet , Mcgrillen Kerry , Porter Sam 
Published: August 2016

IntroductionMusic therapy is frequently used as a palliative therapy (Demmer, 2004), with the primary aim of improving people’s quality of life. To date, primarily because of a paucity of robust research, the evidence for music therapy’s effectiveness on patient reported outcomes is positive but weak (McConnellet al., 2016).Aim(s)This pilot and feasibility study will: test procedures; outcomes and validated tools; estimate recruitment and attrition rates; and calculate the sample size required for a phase III randomised trial to evaluate the effectiveness of music therapy in improving the quality of life of palliative care patients.Method(s)A pilot controlled trial supplemented with qualitative methods with n = 52 patients from an inpatient and day hospice setting. Baseline data collection includes the McGill Quality of Life Questionnaire (MQOL), medical and socio-demographic data. Participants in the intervention arm are offered two 30–45 minute sessions of music therapy per week for 3 consecutive weeks, in addition to care as usual. Participants in the control arm receive care as usual. Follow-up measures administered at 3 and 5-weeks. Qualitative data collection involves focus group/interviews with HCPs and carers.ResultsThe results of the study will ensure a firm methodological grounding for the development of a robust phase III randomised trial of music therapy for improving quality of life in palliative care patients.Conclusion(s)By undertaking the pilot and feasibility trial under normal clinical conditions in a hospice setting, the trial will result in reliable procedures to overcome some of the difficulties in designing music therapy RCTs for palliative care settings.ReferencesDemmer C. A survey of complementary therapy services provided by hospices.J Palliat Med2004;7(4):510–516McConnell T, Scott D, Porter S. Music therapy for end-of-life care: an updated systematic review.Palliat Med2016. doi:10.1177/0269216316635387. Accessed March 4, 2016
Priority setting for end-of-life care
Authors: Spence Michael , Spencer Rebecca , Diffin Janet , Mellor Peter , Grande Gunn 
Published: August 2016

IntroductionEnd-of-life (EoL) care is an under-researched area. It is therefore vital to focus on priorities that are likely to bring the most benefit to patients, carers, and families.AimThis project aimed to identify EoL research priorities of Healthcare Professionals (HCPs) and carers in Greater Manchester.MethodsFollowing a scoping exercise of EOL services in Greater Manchester, CLAHRC GM identified six EOL local research topics for further exploration within the 10 national priorities outlined by PeolcPSP.Education and knowledge for staff and carersAccess to 24-hour care and supportEquitable AccessAdvance care planningCare at homeContinuity of careCLAHRC GM held a priority setting event to consult with 32 HCPs and separate consultations with 26 carers facilitated by local carer groups from Manchester, Salford, and Bury. Carers and HCPs selected their priorities from the topics.ResultsCombining carer and HCP responses, the topics of shared priority were:Advance care planningAccess to 24-hour careEducation and knowledge for staff and carersWhilst carers emphasised training and education as the priority and HCPs focused more on advance care planning, it was clear that all topics had importance to both groups.HCPs also identified important research questions within their chosen topics.ConclusionsThis study provides successful procedures for engaging with stakeholders to develop local priorities to guide EoL research of relevance to HCPs and user representatives.ReferenceBrereton L, Ingelton C, Gardiner C,et al. Lay and professional stakeholder involvement in scoping palliative care issues: methods used in seven European countries.Palliat Med2016
Breathe better: an evaluation of a hospice group to support people with end-stage chronic obstructive disease (COPD)
Authors: Middleton-Green Laura , Lawson George , Rayment Clare 
Published: August 2016

BackgroundThe Breathe Better group (BBG) has been running in the hospice in 2008. It aims to reduce dyspnoea, improve quality of life and mastery of illness for patients with end stage COPD using four methods: education, exercise, pharmacological management and individual consultations. We aimed to ascertain the short and long-term impact of the BBG.MethodA retrospective longitudinal study was performed on patients referred between 2010 and 2013. Data were collected on shuttle walk distance, mastery, Hospital Anxiety and Depression Scores (HADS), advance care planning (ACP), and mortality. Outcomes were analysed using a paired t-test.ResultsData from 56 patients was analysed. Mean shuttle walk distance increased by an average of 10.8 m which was statistically significant (p = 0.05). Total HADS score improved by 2 points. 65% of patients had an ACP after the group, compared with 24% prior to commencement. 76% patients died with 2 years. Place of death was as follows: (n = 45) Care home 11%, Home 7%, Hospital 38%, Hospice 31%, Not recorded 13%. There was a significantly increased rate of hospice death compared to regional and national COPD data and a proportionate reduction in hospital deaths.DiscussionResults suggest that BBG improved shuttle walk distance and recording of future health decisions and may influence place of death.ImplicationsBBG improved patients’ exercise tolerance and ACP. From a public health perspective, the success of BBG suggests other hospices may wish to consider pilot schemes. A larger study with a defined control group (patients choosing not to attend) will allow more accurate comparison. Improved record-keeping is required to enhance data accuracy and reduce missing data.ReferencesChin C, Booth S.Managing breathlessness: a palliative care approach.Postgrad Med J2016Purdy S.Avoiding hospital admissions: What does the evidence say. London: The King’s Fund; 2010Spathis A, Booth S. End of life care in chronic obstructive pulmonary disease: in search of a good death.Int J Chron Obstruct Pulmon Dis2008;3(1):11–29