bluuebunny/crossref_metadata_2025_split huggingface dataset:
Supporting people bereaved through advanced illness: a systematic review of the evidence
Authors: Harrop Emily J , Cowey Luke , Morgan Fiona , Byrne Anthony , Sivell Stephanie , Fitzgibbon Jim , Pickett Sara , Nelson Annmarie 
Published: August 2016

BackgroundPalliative care has an important role to play in addressing the bereavement needs of families, although a lack of evidence-based guidance has been noted (Hudsonet al., 2012; PeolcPSP 2015). A small number of systematic reviews of bereavement interventions are available, but these have typically been restricted to evidence from randomised controlled trials and provide little information on interventions and support specifically provided for adult populations bereaved through advanced, progressive illnesses (e.g. Forteet al., 2004; Currieret al., 2008).AimTo systematically review the evidence on bereavement support for adults bereaved through advanced, progressive illness.MethodsKey databases have been searched using indexed terms and key words for papers published in English between 1990 and 2016. Supplementary searches will also be conducted. The review will include studies conducted in the UK or comparable countries reporting evaluations of interventions or services, delivered to adults bereaved through advanced, progressive illness. Study quality will be assessed using appropriate checklists. This mixed methods review will identify interventions and services and look at both the quantitative and qualitative evidence for their effectiveness and utility.Results/conclusionsThis review, funded by Marie Curie, will help to identify what type of bereavement support works best for different groups of people, and how such support might be improved. It is also being used to inform the development of a Core Outcome Set for bereavement research in palliative care. This presentation will provide an overview of results, highlight gaps in the evidence base and make recommendations for further research.ReferencesCurrier J, Nemeiyer R, Berman J. The effectiveness of psychotherapeutic interventions for bereaved persons: A comprehensive quantitative review.Psychol Bull2008;134:648–661Forte A, Hill M, Pazda R, Feudtner C,et al. Bereavement care interventions: a systematic review.BMC Palliat Care2004;3:3Hudson P, Remedios C, Zordan R,et al. Guidelines for the psychosocial and bereavement support of family caregivers of palliative care.J Palliat Med2012;15(6):696–702Palliative and end of life care Priority Setting Partnership. Putting patients, carers and clinicians at the heart of palliative and end of life care research, 2015.http://www.palliativecarepsp.org.uk/finalreport
Using electronic primary care record searching to help identify people with palliative and anticipatory care needs for 24/7 care
Authors: Mason Bruce , Boyd Kirsty , Steyn John , Kendall Marilyn , Murray Scott A 
Published: August 2016

IntroductionEffective care planning and coordination is strongly associated with fewer hospital admissions in and out-of-hours.1,2Many people who die are not being identified consistently for such pro-active care.3,4Clinical indicators type tools (SPICT™ and GSF-PIG) help professionals identify people but more systematic screening is needed.5AimTo develop an electronic tool using GP surgery software to output a list of patients who might benefit from anticipatory palliative care.MethodsOur prototype search was installed in GP software. It permitted “combination searches” generating a detailed set of outputs. The search was run 35 times in 10 practices over 9 months with iterated refinements to remove over-generation. The researcher attended 31 team meetings and conducted qualitative observations. The palliative care lead in each practice was interviewed.ResultsOver 2,500 patients were identified. After refinement, the search reliably identified around 0.7% patients per practice. Practice teams used the list to prompt patient/carer reviews and often started or updated a Key Information Summary: the Scottish electronic, anticipatory care planning record. Running the searches in practices enabled participating teams to integrate them into their normal working routines.ConclusionsThis ‘proof of concept’ study shows that systematic electronic searches of GP practice lists complements case-based identification by helping primary care teams identify more patients and carers who stand to benefit from a palliative care needs assessment, anticipatory care planning and having current information accessible out-of-hours. It informs future development of electronic primary and secondary care records across the UK.ReferencesMason BL,et al. Coordination of care for people at risk of dying in the next 12 months: a multi-site prospective study and consensus seeking exercise. NIHR Service Delivery and Organisation programme: London; 2013Addington-Hall J,et al. Variations in out of hours end of life care provision across primary care organisations in England and Scotland. Final Report, in NIHR Service and Delivery Organisation Programme, Southampton, UK; 2013Scottish Government, The primary medical services directed enhanced services (Scotland) 2012 palliative care H.a.S.C.I. Directorate, Editor. NHS Scotland: Edinburgh; 2012Murtagh FE, Bausewein C, Verne J,et al. How many people need palliative care? A study developing and comparing methods for population-based estimates.Palliat Med2014;28(1):49–58Mason BL, Boyd K, Murray SA,et al. Developing a computerised search to help UK General Practices identify more patients for palliative care planning: a feasibility study.BMC Fam Pract2015;16(1):99
Which measures assessing quality of death and dying and satisfaction with care at the very end of life have been psychometrically validated? A systematic review
Authors: Kupeli Nuriye , Candy Bridget , Vivat Bella , Harrington Jane , Davis Sarah , Sampson Elizabeth L , Gola Anna , Lodwick Rebecca , Stone Paddy 
Published: August 2016

IntroductionThe very end of life can be associated with pain, anxiety and caregiver burden. Numerous measures seek to assess the quality of death and dying and satisfaction with care, but there is a lack of evidence and consensus on the best tools.AimsTo identify all existing tools for assessing quality of death and dying and the quality of care and satisfaction with care at the very end of life, and systematically evaluate those which have been psychometrically validated.MethodFour databases (Medline, Embase, Cinahl and Psycinfo) were searched in February 2016 using a combination of MeSH and free-text terms on end of life and satisfaction with care. Article titles, abstracts and full-text papers were reviewed to identify all papers reporting multi-item measures for assessing quality of death and dying and/or quality of care and satisfaction with care at the very end of life. Articles reporting on at least one psychometric investigation of the measures identified were then assessed for quality, using the COSMIN checklist (Mokkink, 2010).ResultsThe initial search terms identified 4136 articles after excluding any duplicates. Seventy-seven papers, reporting 48 different measures, met the initial inclusion criteria. The most commonly used measures were the Quality Of Death and Dying (QODD; Patrick, 2001) and FAMCARE (Kristjanson, 1986). Both have been validated in a variety of cultural settings and participant groups.ConclusionMany measures assess quality of death and dying and satisfaction with care, but few have been thoroughly validated. QODD and FAMCARE are the best of those assessed.ReferencesKristjanson LJ.Indicators of quality of palliative care from a family perspective.J Palliat Care1986;1(2): 8–17Mokkink LB, Terwee CB, Patrick DL,et al. The COSMIN checklist for assessing the methodological quality of studies on measurement properties of health status measurement instruments: an international Delphi study.Quality of Life Research2010;19(4):539–549Patrick DL, Engelberg RA, Curtis JR.Evaluating the quality of dying and death.J Pain Symptom Manage2001;22(3):717–726
Advance care planning in dementia: ‘living well’ with an uncertain future
Authors: Ryan Tony , McKeown Jane 
Published: August 2016

IntroductionThere is compelling evidence that Advance Care Planning (ACP) remains a key factor in the delivery of appropriate end of life care and facilitates the timely transition to palliative care for people with dementia (van der Steenet al.,2014).AimsTo explore the experiences in the use of ACP amongst spousal couples affected by dementia.MethodThe study utilised a constructivist grounded theory (CGT) methodology (Charmaz 2014). Sixteen participants (eight couples) living at home in the community were interviewed to gain insight into the process of planning for future and use of ACP.ResultsAll participants were aged 65 or above and the minimum length of time since diagnosis was 18 months. There was limited evidence that ACP was being undertaken by participants. A number of factors were identified to help explain why this was the case with a focus on the core social process of ‘postponement’. Important categories are noted: discordance between ACP and ‘living well’ with dementia; caregiver precedence in seeking to maintain an equilibrium in day to day life; maintaining couplehood.ConclusionsACP remained a difficult proposition for spousal couples. Reluctance to engage in ACP for them is grounded in the realities of living as a couple with dementia, perceptions of the planning process and caregiver priorities. The findings will have implications for practice which may best facilitate actions enabling ACP to take place. The work also contributes to burgeoning discussion around the planning of future care in relation to the discourse of individual responsibility in end of life care.ReferencesCharmaz, K. Constructing Grounded Theory (2nd Edition). London: SAGE; 2014van der Steen, Radbruch L, Hertogh CM,et al. White paper defining optimal palliative care in older people with dementia: A Delphi study and recommendations from the European Association for Palliative Care.Palliat Med2014;28(3):197–209
Challenges in resource planning as a barrier to patients achieving death at home
Authors: Sayma Meelad , Kerwat Doa’a , Jamshaid Shiraz , Saleh Dina , Ahmed Aaniya , Oyewole Folashade , Wahid Abdul Samad 
Published: August 2016

IntroductionEvidence suggests that the majority of patients wish to die at home. However, this is only attainable for few.AimTo identify the barriers and facilitators to being able to die at home in the UK. Methods: A two-step study approach was adopted.1A systematic literature review (SLR) and2primary qualitative data collection. In the SLR 3241 papers were retrieved. 72 articles remained after screening and filtering processes. Qualitative articles were analysed using meta-ethnography and quantitative articles were analysed using a descriptive approach. In the primary study, 33 in-depth interviews were conducted with experts in end-of-life care. Thematic Analysis of interview transcripts was conducted. Approval from Imperial College Research Ethics Committee was obtained for the study. The results from the SLR and primary data collection were amalgamated to produce a set of overarching barriers and facilitators.ResultsSix barriers and four facilitators were identified. The specific barrier of ‘challenges in resource planning’ will be discussed in this paper. This overarching theme included logistical issues in getting both the patient and equipment home, lack of continuity of care and geographic variation in resource provision, including 24/7 care.ConclusionsAddressing this barrier could allow more patients to achieve death at home. However, it is important to acknowledge the qualitative nature of results. As a result, further research is required to identify the relative impact this barrier has on patients’ ability to achieve home death when compared to other barriers and facilitators identified.
Contact with out of hours services by palliative care patients in a rural care setting
Authors: Bowers Sarah , Hillis Eileen , Shennan Bill , Isherwood Ruth 
Published: August 2016

IntroductionPalliative care provision for patients in rural areas has unique challenges for out of hours usage. GPs on this Scottish island cover both in and out of hour services for 6000 patients with no additional palliative out of hours coverage from district nurses or the Macmillan specialist nurse.AimThe project aimed to assess the out of hours need of palliative care patients on the island by looking at the demographics of patients, the service contacted and the reason for contact from the start of 2015 until 1st August.MethodDocman was utilised to identify encounters with out of hours services on the island. 16 palliative care patients were identified in the given time period on the island and became the focus of this project.ResultsFor the 16 patients on the island, there were 33 presentations to out of hours in total, with the number of presentations per patient ranging from 0 to 6. The majority of contacts were directly to A+E with only 6/33 contacts via NHS24. Most presentations were disease related (e.g. hiccups, chest infection) though 5/33 contacts were for non-emergency reasons (e.g. prescription request, dressings change). None of the presentations were deemed to be as a result of uncontrolled symptoms.ConclusionOut of hours contact was not related to symptom burden, as patients appeared to have well-controlled symptoms. The extent to which this is the result of anticipatory care planning requires further investigation.
Lothian care assistant development programme – an education initiative
Authors: Cassidy L 
Published: August 2016

Introduction and aimsWith Scottish Government’s integration of health and social care, social care teams are increasingly leading the care for elderly clients and their families who are living with a terminal illness and also have multiple complex care needs. Addressing the palliative care learning needs of social care workers is essential to ensure the provision of high quality palliative care in families’ in their preferred place of care, and to reduce emergency admissions to hospital where avoidable.The education programme aimed to increase the knowledge and confidence of social care workers working in a care home or home care setting in Lothian.MethodsThrough consultation, a tiered approach to learning was developed. Care workers attended a single training day, with a portion going on to complete an online module. The module was contextualised to reflect the Lothian focus. Care workers were supported by a workplace mentor.Results500 social care workers will have completed the single day training and 75 will have gone on to have completed the online professional development module by the conference date. Single day evaluation, pre and post knowledge and confidence questionnaire and focus groups are being used to evaluate the programme and its transferability.ConclusionsTo achieve the aims set out in the Strategic Framework for Action on Palliative and End of Life Care, it is essential that social care teams are adequately supported and trained to provide high quality palliative care for people and their families living with a terminal illness.ReferencesBliss J, While A.Decision-making in palliative and continuing care in the community: an analysis of the published literature with reference to the context of UK care provision.Inter J Nurs Studies2003;40:881–888Kelly D, Gould D, White I, Jane BE. Modernising cancer and palliative care education in the UK: insights from one cancer network.European J Oncol Nurs2006;10:187–197Scottish Government. Strategic Framework for Action on Palliative and End of Life Care. Edinburgh: The Scottish Government; 2015
Electronic key information summaries can highlight patients’ wishes out of hours
Authors: Finucane Anne , Tapsfield Julia , Hall Charlie , Lunan Carey , McCutheon Hazel , McLoughlin Peter , Rhee Joel 
Published: August 2016

IntroductionElectronic Key Information Summaries (KIS) are shared electronic patient records widely used throughout Scotland.1These allow selected parts of the GP patient record to be routinely shared with healthcare professionals across settings. The KIS may contain vital information to support out of hours palliative care decision-making, such as patient preferences for place of care, DNAPCR status and anticipatory medicines.AimTo identify when different information pertinent to out of hours palliative care decision-making was serially recorded within the KIS for patients who died with cancer, organ failure or frailty and/or dementia.MethodA retrospective review of the primary care notes of deceased patients across nine general practices in Lothian was conducted in 2014. Sudden and unexpected deaths were excluded. Data were collected on the type and timing (number of weeks before death) of information recorded in the KIS.ResultsWe analysed 605 patient notes. A KIS was shared for patients with organ failure 22 weeks before death (Mdn = 22, IQR = 10–31), and for those with frailty and/or dementia, 20 weeks before death (Mdn = 20, IQR = 8–34). For patients with cancer, KIS’s were commenced later (Mdn = 14, IQR = 6–27). Most patients with a KIS had information on anticipatory care, preferred place of care and DNACPR shared during the last month of life. Information on anticipatory medicines was shared two weeks before death (Mdn = 2, IQR = 1–6).ConclusionElectronic key information summaries facilitate the timely documentation and sharing of patient information that is vital to support out of hours decision-making and prevent inappropriate hospital admissions.ReferenceTapsfield J, Hall C, Lunan C, McCutheon H, McLoughlin P, Rhee J, Rus A, Spiller J, Finucane A, Murray SA. Many people in Scotland now benefit from anticipatory care before they die: an after death analysis and interviews with general practitioners.BMJ Supportive and Palliative Care2016. doi:10.1136/bmjspcare-2015-001014
The unique role of the nurse preceptor in community palliative care
Authors: Legg MJ , Graham L , McAleer A , McCann L , Dempster M 
Published: August 2016

IntroductionPractitioners new to palliative care experience multifaceted stressors from exposure to complex and challenging situations.3Preceptorship is considered an accessible and generalizable intervention to address issues with wellbeing, recruitment and retention of nursing staff.2There is however a lack of research to enhance our understanding of this role in supporting newly hired staff1and within palliative care.Aim(s)This study aims to develop an understanding of the nurse preceptor role in community palliative care, in order to determine the theoretical underpinnings and scope of the roleMethod(s)Nurse preceptors involved in a programme for newly hire RNs and HCAs to a community palliative nursing service were identified by the hospice practice educator and invited to take part in focus groups. A semi-structured interview schedule was developed from previous literature.ResultsA total of n = 7 nurse preceptors were included in focus groups, all of whom had undertaken the preceptor role for approximately 8 months. A number of themes emerged which will aid the further development of this vital role in palliative care settings.Conclusion(s)As far as the research team is aware, this this is the first study to explore the role of the nurse preceptor in palliative care, with both nurses and health care assistants. Preceptorship has emerged as a major theme in facilitating role development, with the potential to lessen the impact of a practitioner making the transition into palliative care.ReferencesHyrkäs K, Shoemaker M. Changes in the preceptor role: re-visiting preceptors’ perceptions of benefits, rewards, support and commitment to the role.J Advanced Nurs2007;60(5):513–524McCloughen A, O’Brien L. Development of a mentorship programme for new graduate nurses in mental health.Inter J Mental Health Nurs2005;14(4):276–284Newton J, Waters V. Community palliative care clinical nurse specialists descriptions of stress in their work’.Inter J Palliative Care Nurs2001;7(11):531–540
THE USE OF THE PAEDIATRIC ASSESSMENT TRIANGLE IN THE MANAGEMENT OF THE SICK CHILD
Authors: Ogden Kimberley 
Published: August 2016

BackgroundThe Paediatric Assessment Triangle (PAT) has been proven to be effective in the general impression of the health status of the child and can interlink the potential underlying pathophysiology so to alert the clinician into how critically ill/ injured the child might be. It is a rapid ‘hands off’ approach when you first encounter the child. The aim is to highlight the use of this assessment tool to allow the clinician a step wise approach to paediatric care so to enhance our treatment in the prehospital environment.MethodA mixed method approach was used to gather quantifiable data from auditing patient report forms over a 3 month period during the implementation of the PAT which was followed by a questionnaire to gather qualitative information from the staff regarding their feelings towards using it.ResultsData gathered from patient report forms over the 3 month period after the introduction of the PAT showed an initial baseline of 12% of it being used. Once the tool had been implemented an increase to 63.3% showing a significant uptake from the staff who were trained in its use.The questionnaire indicated that staff were welcoming of the use of the assessment tool and felt more confident when assessing a child.ConclusionThe PAT showed a marked increase in being used throughout this project and the majority of staff appeared to be able to utilise it appropriately.An attempt to perform this on a larger scale would be beneficial to gauge whether it would be welcomed on a broader spectrum amongst staff and managers.Recommendations would include receiving more training for paediatrics and for consideration to be made to create a clinical performance indicator for child patients to ensure that patient report forms are being completed appropriately and quality care is being delivered to this category of patients.