bluuebunny/crossref_metadata_2025_split huggingface dataset:
12 Exploring experiences of compassion, resilience and self-care in clinical psychologists working in palliative care
Authors: Cramond Laura , Fletcher Ian , Rehan Claire 
Published: May 2024

IntroductionCompassion fatigue refers to the emotional and physical exhaustion that can be felt by professionals in caring roles, whereas compassion satisfaction encompasses the positive aspects of helping others. Levels of compassion satisfaction and fatigue have been found to be inconsistent in palliative care professionals. This could have serious implications for patients, professionals, and organisations.AimThis study explored the experiences of 12 clinical psychologists working in palliative care to learn more about the impact that supporting people at the end of life has on compassion and the support that professionals may require to remain resilient and practice self-care.MethodA qualitative approach was taken, using semi-structured interviews and interpretative phenomenological analysis.ResultsSix overarching themes were identified: Being Part of Something Special, The Therapeutic Relationship at The End of Life, Pressure to do More With Less, The Change in Self as a Result of Involvement, The Idea of the Consummate Professional, and Practicing What you Preach. The professionals’ experiences were characterised by the relationship between them and patients at the end of life, the lasting impact of the work on professionals, and the effects of recent organisational change in healthcare.ConclusionsProfessionals working in palliative care should be supported to reflect on their experiences of compassion fatigue and satisfaction, and encouraged to consider how to practice good self-care to protect their well-being, build resilience and ensure the quality of patient care.
15 A model for practice implementation of a person-centred approach to carer assessment and support within palliative care (plan, pilot, train, sustain)
Authors: Diffin Janet , Ewing Gail , Rowland Christine , Grande Gunn 
Published: May 2024

IntroductionThe Carer Support Needs Assessment Tool (CSNAT) intervention ensures a person-centred approach to carer assessment and support within palliative care.1–3An online toolkit has been developed to prepare and support organisations with implementation of the CSNAT intervention in palliative care practice.AimsTo test the feasibility of an online toolkit to assist organisations with implementation of a person-centred approach to carer assessment and support within palliative care.MethodsThe Plan, Pilot, Train, Sustain model has been developed from the on-going CSNAT research programme; based on feedback from 89 organisations supporting carers using the CSNAT intervention. This model underpins the online toolkit which consists of two learning components: (i) to provide practitioners with the knowledge to use the CSNAT intervention, (ii) to assist organisations to plan, pilot and sustain the use of the CSNAT intervention. Seven organisations have been recruited to a feasibility study (due to conclude June 2017). Up to 20 practitioners will provide feedback on toolkit content and online user experience via a survey and qualitative interview.ResultsFeasibility results will be reported: how informative and useful the content is, and how suitable it is for use within existing resources of palliative care services (e.g. time to complete, IT resources). This will enable refinements to toolkit content and instructions.ConclusionsThis online toolkit will assist services to respond to the increasing pressures to assess and address the support needs of family carers by providing accessible and structured guidance on how to implement the CSNAT intervention, and help ensure embedding into practice.References. Ewing G, Grande G. Development of a Carer Support Needs Assessment Tool (CSNAT) for end-of-life care practice at home: A qualitative study. Palliative Medicine2013;27(3):244–256.. Ewing G, Brundle C, Payne S, Grande G. The Carer Support Needs Assessment Tool (CSNAT) for Use in Palliative and End-of-life Care at Home: A Validation Study. Journal of Pain and Symptom Management2013;46(3):395–405.. Ewing G, Austin L, Diffin J, Grande G. Developing a person-centred approach to carer assessment and support. British Journal of Community Nursing2015;20(12): 580–584.
17 Improving care and support in advanced copd: six recommendations of the population-based living with breathlessness study
Authors: Farquhar Morag , Ewing Gail , White Patrick , Burge Peter , Mahadeva Ravi , Gardener A Carole , Moore Caroline , Butcher Hanne Holt , Howson Sophie , Booth Sara , Ling Tom 
Published: May 2024

IntroductionChronic obstructive pulmonary disease (COPD) is a chronic progressive condition with high symptom-burden. National guidance calls for quality end-of-life care for patients with any condition, yet we rely on frameworks developed for cancer with its largely predictable trajectory.AimTo inform a new framework to improve care and support in advanced COPD.MethodsThe Living with Breathlessness Study was a multiple-component, population-based, mixed-method longitudinal, multiple-perspective programme to identify new evidence on health and social care needs and preferences of patients with advanced COPD and their carers. It followed more than 500 patients and carers for up to 18 months through interview and survey methods. Qualitative data on barriers and facilitators to meeting needs were collected from clinicians. Programme-wide evidence was synthesised to identify recommendations. Stakeholder views were then collected through a workshop and online survey.ResultsSix inter-related recommendations emerged, linked by the concept of proactive person-centred care, supported by action points to enable delivery. In brief: (1) stop focusing on the challenge of prognostication as a barrier to meeting need, (2) change targets to incentivise person-centred care, (3) enable identification of patient support needs, (4) identify and support carers, (5) identify and respond to psychological morbidity, (6) change societal understandings. The recommendations garnered significant support from stakeholders, with caution regarding ease of implementation.ConclusionThese recommendations could inform a new framework for care and support in advanced COPD likely to have resonance for those living with other advanced non-malignant long term conditions, and clinicians striving to support them.
23 Talking about the future with homeless people with ill health: the need for a different conversation
Authors: Hudson Briony F , Shulman Caroline , Low Joseph , Hewett Nigel , Daley Julian , Davis Sarah , Brophy Niamh , Howard Diana , Vivat Bella , Kennedy Peter , Stone Patrick 
Published: May 2024

IntroductionHomelessness is associated with death at a young age, frequently related to physical and mental health problems complicated by drug or alcohol dependence (Stringfellow et al., 2015). Homeless people experience high symptom burden at the end-of-life (Tobey et al., 2016), yet access to palliative care services is limited (Shulman et al., In press). Conversations around future wishes and preferences with homeless people rarely take place.AimTo explore the barriers to conversations about the future with unwell homeless people and alternative approaches to these difficult conversations.MethodsFocus groups and interviews were used to explore views and experiences around palliative care with currently and formerly homeless people (n=38), healthcare professionals (n=32), hostel and outreach staff (n=39) and drug and alcohol workers (n=4), from three London boroughs. Verbatim transcripts were analysed using thematic analysis.ResultsThree themes were identified relating to the challenges of discussing future care preferences: the recovery focused nature of services; uncertainty around when and how to have conversations; fear of negative impact on the homeless person and staff.ConclusionsThere is little acknowledgement, discussion or planning around the health needs of unwell homeless people who are at risk of dying, reducing opportunities for person-centred care. An approach that considers current and continuing care needs that accommodates potential improvements and deterioration is needed. Identifying those whose health is a concern, rather than those thought to be imminently dying may help to ensure the wishes and choices of homeless people are respected, if their health deteriorates.References. Shulman C, Hudson BF, Low J, Hewett N, Daley J, Kennedy P, Davis S, Brophy N, Howard D, Vivat B, Stone P, (In press). Homelessness at the end of life: A qualitative analysis of the barriers in providing palliative care for people who are homeless. Palliative Medicine.. Stringfellow EJ, Kim TW, Pollio DE, Kertesz SG. Primary care provider experience and social support among homeless-experienced persons with tri-morbidity. Addiction science & clinical practice2015;10:A64–A64.. Tobey M, Manasson J, Decarlo K, Ciraldo-maryniuk K, Gaeta JM, Wilson E. Homeless Individuals Approaching the End of Life: Symptoms and Attitudes. Journal of Pain and Symptom Management2016; In press.
38 Understanding learning needs and ways of engaging with web apps: the development of an innovative educational web-based application for the respect process
Authors: Soosaipillai Gehan , Stables Tom , Pfeifer Nadine , Mooney Jenny , Archer Stephanie , Darzi Ara , Stirling Lucy Caroline 
Published: May 2024

IntroductionOptimal care of patients who are at risk of acute deterioration requires compassionate and competent communication and shared decision making (Department of Health 2008). ReSPECT (Recommended Summary Plan for Emergency Care and Treatment) is a new national process that creates personalised recommendations for a person’s clinical care in a future emergency in which they are unable to make or express choices (ReSPECT Steering Group 2017).The ReSPECT Educational Material Project Operations Group at UCLPartners is creating an innovative web-app to support health and care staff of all disciplines, in all settings, in the ReSPECT process.AimsUnderstand user learning needs and utilise their experience and knowledge to inform the content of the web-app.MethodsWe conducted interviews and focus groups with 31 health and care staff from a range of settings, in the NHS, third and private sectors, including a NHS trust that has implemented ReSPECT. We explored the pedagogy of online learning and the reality of engaging in such conversations.Results• Users need to see representations of themselves to learn from and connect with the material.• Apprenticeship learning models that encourage reflection are the most effective for the difficult conversations.• Length and credibility of information are key factors in engaging with learning materials.• Online learning is often rushed through to get to the evaluation part.ConclusionThese insights are guiding the development of the web-app. We will use iterative-design to test the content and improve usability. The educational impact of the web-app and impact on patient outcomes will be evaluated in future studies.References. Department of Health, 2008.End of Life Care Strategy – promoting high quality care for all adults at the end of life,. ReSPECT Steering Group, 2017. ReSPECT (Recommended Summary Plan for Emergency Care and Treatment). Available at: http://www.respectprocess.org.uk.
41 Solstice: sancuso in supportive and palliative care; a feasibility study in patients with cancer and refractory nausea and vomiting
Authors: Villa Shaun , Berman Richard , Dean Emma , Carter Louise 
Published: May 2024

BackgroundNausea and vomiting (N and V) are common, debilitating symptoms in patients with cancer, often precipitating inpatient admission for subcutaneous/intravenous antiemetics and re-hydration. Currently, there are no evidence-based solutions and treatment algorithms differ across clinical practice. Some of these patients will experience difficulty swallowing tablets and/or are unable to keep oral medications down. Treatments for patients with cancer may also reduce the ability of the intestines to absorb medicines within a tablet.SANCUSO (Granisetron Transdermal System [transdermal skin patch]) is indicated for the prevention of (N and V) in patients receiving moderately and/or highly emetogenic chemotherapy regimens. The SANCUSO patch delivers consistent, predictable levels of granisetron throughout five days with smoother daily pharmacokinetics compared to daily dosing. The role of Sancuso in patients with cancer and refractory N and V which is unrelated to chemotherapy has not yet been explored.MethodsAn open-label, randomised feasibility study comparing SANCUSO with ‘physician’s choice’ of antiemetic in patients with cancer and refractory N and V. A feasibility study is required at this juncture as standard antiemetic treatment in this patient population is undefined, and the therapeutic efficacy of SANCUSO requires appraisal before embarking on a larger randomised trial. To assess feasibility, we have categorised objectives into four domains; (i) Recruitment - assess the number of patients approached, consent rate, number of eligible patients and explore the methods used to identify potential patients (ii) Patients - willingness to participate and acceptability of the intervention (iii) Clinicians’ - ability to recruit, which physician’s choice is selected, experience including monitoring of prescribing practice in the control arm (iv) Trial procedures - determine the appropriate primary outcome, adherence/compliance rates.ImplicationsWe aim to determine whether this approach is feasible and warrants further investigation in a larger randomised Phase II trial leading to a confirmatory multi-centre randomised Phase III trial to include a cost-effectiveness appraisal.
56 Educational interventions for improving knowledge of dementia progression and the mental health of family carers: a systematic review
Authors: Lee Cheuk Yan , Moore Kirsten , Candy Bridget , Sampson Liz 
Published: May 2024

AimDementia is one of the common causes of death worldwide. The progressive nature of dementia can cause chronic grief among caregivers, increasing the risk of developing persistent complex bereavement disorder (DSM 5, 2013). According to the European Association of Palliative Care (EAPC) white paper (2014), education on the progression of dementia should be provided to the family of an individual with dementia. This systematic review aims to examine the effect of educational interventions focusing on providing information regarding the progression of dementia to informal caregivers.MethodMEDLINE, PsycINFO and CINAHL were searched in March 2017. Randomised controlled trials (RCTs) with samples of informal carers who are providing day-to-day caring for an individual with dementia living in the community were eligible. Included interventions were educational programmes that involve a component aimed to increase carer’s understanding of the progression of dementia. Two authors independently assessed studies for eligibility. Risk of bias of included studies will be assessed independently by two authors.ResultsWe screened 2781 citations and 16 studies were included. Preliminary results suggest that educational interventions may improve knowledge of dementia among carers, and may reduce depression. Reduction in carer burden and stress was also reported in some studies.ConclusionThis is the first systematic review to consider the potential benefit of recommendations in the EAPC white paper. Based on these preliminary results, prior to full critique and review analysis, there is some evidence from individual studies to support the effectiveness of educational intervention in improving carers’ knowledge in dementia.References. Van der Steen, J. T., Radbruch, L., Hertogh, C. M., de Boer, M. E., Hughes, J. C., Larkin, P., & Koopmans, R. T. (2014). White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care. Palliative medicine, 28(3), 197–209.. American Psychiatric Association. (2013).Diagnostic and statistical manual of mental disorders (DSM-5®). American Psychiatric Pub.
Positive psychosocial factors may protect against perceived stress in people with systemic lupus erythematosus with and without trauma history
Authors: DeQuattro Kimberly , Trupin Laura , Patterson Sarah , Rush Stephanie , Gordon Caroline , Greenlund Kurt J , Barbour Kamil E , Lanata Cristina , Criswell Lindsey A , Dall'Era Maria , Yazdany Jinoos , Katz Patricia P 
Published: May 2024

ObjectiveTrauma history is associated with SLE onset and worse patient-reported outcomes; perceived stress is associated with greater SLE disease activity. Stress perceptions vary in response to life events and may be influenced by psychosocial factors. In an SLE cohort, we examined whether stressful events associated with perceived stress, whether psychosocial factors affected perceived stress, and whether these relationships varied by prior trauma exposure.MethodsThis is a cross-sectional analysis of data from the California Lupus Epidemiology Study, an adult SLE cohort. Multivariable linear regression analyses controlling for age, gender, educational attainment, income, SLE damage, comorbid conditions, glucocorticoids ≥7.5 mg/day and depression examined associations of recent stressful events (Life Events Inventory) and positive (resilience, self-efficacy, emotional support) and negative (social isolation) psychosocial factors with perceived stress. Analyses were stratified by lifetime trauma history (Brief Trauma Questionnaire (BTQ)) and by adverse childhood experiences (ACEs) in a subset.ResultsAmong 242 individuals with SLE, a greater number of recent stressful events was associated with greater perceived stress (beta (95% CI)=0.20 (0.07 to 0.33), p=0.003). Positive psychosocial factor score representing resilience, self-efficacy and emotional support was associated with lower perceived stress when accounting for number of stressful events (−0.67 (−0.94 to –0.40), p<0.0001); social isolation was associated with higher stress (0.20 (0.14 to 0.25), p<0.0001). In analyses stratified by BTQ trauma and ACEs, associations of psychosocial factors and perceived stress were similar between groups. However, the number of recent stressful events was significantly associated with perceived stress only for people with BTQ trauma (0.17 (0.05 to 0.29), p=0.0077) and ACEs (0.37 (0.15 to 0.58), p=0.0011).ConclusionEnhancing positive and lessening negative psychosocial factors may mitigate deleterious perceived stress, which may improve outcomes in SLE, even among individuals with a history of prior trauma who may be more vulnerable to recent stressful events.
Six-minute walk test in healthy British service personnel
Authors: O'Sullivan Oliver , Felton J , Mclean S , Bennett A N 
Published: May 2024

IntroductionThe 6 min walk test (6MWT) is a widely used, safe and effective submaximal exercise test. The primary outcome is the distance walked, but additional physiological and patient-reported metrics can be recorded. It is used to assess function and is commonly used within UK Defence Rehabilitation. However, there are no published British military 6MWT data in a non-injured population. This study reports the 6MWT procedure and results from healthy British service personnel.MethodsA convenience sample of 46 individuals (male n=40) undertook 95 6MWTs over three study visits throughout a year. They were performed on a 20 m straight-line route, administered by an exercise rehabilitation instructor and preceded by anthropometric measurements (height, weight). Physiological measures (HR, oxygen saturations (SpO2)) and patient-reported measures (Borg shortness of breath (SoB), rate of perceived exertion (RPE) and fatigue) were taken before and after the assessment. Statistical tests were performed between pre-test and post-test measures, and sex and body mass, and concurrent cardiopulmonary exercise tests (CPET) with 6MWT distance.ResultsThe mean 6MWT distance was 705.5±86 m; males 709.4±86.9 m and females 685.9±81.9 m (p=0.32), with a median Borg SoB of 1 (IQR: 0–2) and RPE 9 (IQR: 7–11), and a negative correlation between body mass index and 6MWT distance, p=0.007. There were no significant differences between pre-test and post-test measures. Peak workload and VO2Max correlated weakly with 6MWT distance (0.336, p=0.01 and 0.375, p=0.09, respectively), but submaximal CPET measures did not.ConclusionThese results provide a benchmark for British military 6MWT data to guide clinical and research use. However, a larger dataset is required for validation and normative values.
Opinion Change or Differential Turnout: Changing Opinions on the Austin Police Department in a Budget Feedback Process
Authors: Gelauff Lodewijk , Goel Ashish 
Published: May 2024

In 2020 the tragic murder of George Floyd at the hands of law enforcement ignited and intensified nationwide protests, demanding changes in police funding and allocation. This happened during a budgeting feedback exercise where residents of Austin, Texas were invited to share opinions on the budgets of various city service areas, including the Police Department, on an online platform designed by our team. Daily responses increased by a hundredfold and responses registered after the “exogenous shock” overwhelmingly advocated for reducing police funding.
This opinion shift far exceeded what we observed in 14 other Participatory Budgeting elections on our Participatory Budgeting Platform, and can’t be explained by shifts in the respondent demographics. Analysis of the results from an Austin budgetary feedback exercise in 2021 and a follow-up survey indicates that the opinion shift from 2020 persisted, with the opinion gap on police funding widening. We conclude that there was an actual change of opinion regarding police funding.
This study not only sheds light on the enduring impact of the 2020 events and protests on public opinion, but also showcases the value of analysis of clustered opinions as a tool in the evaluation toolkit of survey organizers.
CHUNAV: Analyzing Hindi Hate Speech and Targeted Groups in Indian Election Discourse
Authors: Jafri Farhan Ahmad , Rauniyar Kritesh , Thapa Surendrabikram , Siddiqui Mohammad Aman , Khushi Matloob , Naseem Usman 
Published: May 2024

In the ever-evolving landscape of online discourse and political dialogue, the rise of hate speech poses a significant challenge to maintaining a respectful and inclusive digital environment. The context becomes particularly complex when considering the Hindi language—a low-resource language with limited available data. To address this pressing concern, we introduce the
CHUNAV
dataset—a collection of 11,457 Hindi tweets gathered during assembly elections in various states.
CHUNAV
is purpose-built for hate speech categorization and the identification of target groups. The dataset is a valuable resource for exploring hate speech within the distinctive socio-political context of Indian elections. The tweets within
CHUNAV
have been meticulously categorized into “Hate” and “Non-Hate” labels, and further subdivided to pinpoint the specific targets of hate speech, including “Individual”, “Organization”, and “Community” labels (as shown in Figure 1). Furthermore, this paper presents multiple benchmark models for hate speech detection, along with an innovative ensemble and oversampling-based method. The paper also delves into the results of topic modeling, all aimed at effectively addressing hate speech and target identification in the Hindi language. This contribution seeks to advance the field of hate speech analysis and foster a safer and more inclusive online space within the distinctive realm of Indian Assembly Elections.