bluuebunny/crossref_metadata_2025_split huggingface dataset:
How complete are our clerkings? A project aimed at improving the quality of medical records by using a standardised proforma.
Authors: Chow Jij , Yvon Camille , Stanger Tim 
Published: February 2014

AbstractClerking a patient is the first and most important contact that any medical team has with the patient. It provides information that may not be available later in the admission if recorded improperly, such as referral letters, collateral history, dosette boxes or prescription sheets. The quality of data recorded from this encounter was examined at a busy district general hospital surgical department. Initial measurement demonstrated that less than half of certain key parameters like dosages of medication were being recorded by clerking doctors. A clerking proforma was therefore designed to combat this problem. Over three audit cycles (n = 170, 150, 174) the proforma showed statistically significant improvements in the proportion of data that was captured at initial contact with the patient. We conclude that the introduction of proformas for clerking significantly improves the collection of data that impacts patient care during their hospital stay.
BOTH SIDES OF THE FENCE: METHODOLOGICAL CHALLENGES IN UNDERTAKING RESEARCH INTO END OF LIFE CARE FOR PRISONERS
Authors: Turner M , Peacock M , Froggatt K , Payne S , Fletcher A , Gibson R , Scott G 
Published: February 2014

IntroductionThe number of older prisoners in the UK has more than doubled in the last decade, with the greatest increases amongst those over 70. Around 40% of older prisoners are sex offenders, many of whom are in prison for the first time due to historic abuse. Longer sentences and more stringent release criteria mean that increasing numbers of anticipated deaths in prison are predicted. Prison staff experience tensions between care and custody and demands for considerable emotional labour in delivering palliative care to such prisoners.Aim(s) and method(s)This paper presents some of the methodological challenges encountered during the early stages of the ‘Both sides of the fence’ study, which uses action research to develop a transferable model of integrated palliative care for prisoners. The first phase comprises a detailed situational analysis to explore current palliative care provision in one prison; then healthcare and custodial staff participate in action cycles to implement and evaluate changes to practice.ResultsA prison with a large population of older and disabled prisoners was identified as the research site, and access was granted following ethical and governance approvals. Engagement of diverse groups of staff in the research required multiple meetings, extensive networking and the visible on-site presence of the researcher; this engagement led to an important protocol amendment to include focus groups with prisoners who provide informal care to fellow prisoners.Conclusion(s)Establishing effective connections with a wide range of prison staff has been key to overcoming the methodological challenges and progressing the research.
SUPPORTING PATIENTS AND THEIR FAMILIES WHO WISH TO DIE AT HOME - BEREAVED RELATIVES' VIEWS ABOUT THE CARE AND SUPPORT RECEIVED
Authors: Mayland CR , Lees C , West A , Cox T , Mason SR , Ellershaw JE 
Published: February 2014

IntroductionAlthough focus is placed on achieving patient preference to die at home, ensuring the provision of good quality care and family support is equally important.Aim(s) and method(s)To assess quality of care and family support, as perceived by bereaved relatives, using ‘Care Of the Dying Evaluation’ (CODE), a 40-item validated post-bereavement questionnaire based on key components of best practice for care of the dying. 291 next-of-kin (NOK) to adult patients, who died an ‘expected’ death at home in Northwest England from advanced incurable illness between July 2011 and December 2012, were identified using the Preferred Place of Care database. All NOK were invited to complete CODE at least two months following the bereavement, with a reminder sent 4 weeks later.Results72 NOK (24.7%) returned the completed CODE questionnaire. Participants were mainly female (n=47, 65.3%), a spouse or partner (n=40, 55.6%) and aged 50 years or above (n=57, 79.1%). Most deceased patients had advanced cancer (n=57, 79.2%). Overall, patient care was perceived as good, with 65 NOK (90.3%) reporting the patient was treated with dignity and respect ‘always’ or ‘most of the time’. Only 55 (76.4%) NOK, however, reported they were adequately supported. Unmet emotional support (n=20, 27.7% reporting this was ‘fair’ or ‘poor’) and information needs (n=24, 33.3% reporting discussions about fluids would have been helpful) were identified.Conclusion(s)Despite limitations in sample size and participant representativeness, more proactive means to support families and meet communication needs are required to improve the experience for patients and families who wish to die at home.
CANCER CARERS MEDICINES MANAGEMENT: A FEASIBILITY TRIAL OF AN EDUCATIONAL INTERVENTION FOR MANAGING END OF LIFE PAIN MEDICATION
Authors: Latter S , Lowson E , Hopkinson J , Hughes J , Richardson A , Duke S , Anstey S , Bennett M , May C , Smith P 
Published: February 2014

IntroductionA majority of people with advanced cancer will experience pain and family carers play an important role in managing pain medication at home. There is evidence carers need support with this, yet no research in the UK has developed and tested theory-driven interventions to help them manage pain medicines. We are conducting a Phase I-II feasibility study (MRC 2008) to develop a new intervention: Cancer Carer Medicines Management (CCMM).Aim(s) and method(s)To summarise Phase I, outlining the process of CCMM development. A staged multi-method approach was used to obtain current evidence to inform CCMM's development: a systematic literature review of interventions for carer end of life medicines management; a scoping of practice and theoretical contexts; interviews and user involvement group consultations with patients, carers, and health professionals with palliative care experience. This informed two participatory action research workshops to design and develop an intervention. The resulting prototype intervention was then further refined through a consultative review process.ResultsThis staged, collaborative approach is appropriate and successful in enabling an evidence-based, clinically applicable intervention to be developed.Conclusion(s)The intervention development process has ensured that CCMM reaches the feasibility trial stage with a robust grounding in carer experience, clinical practice and research evidence. In turn, the intervention has the potential to enhance the nurses' practice in the community to meet carers' needs in pain medication management.
A LIVING COMMUNITY PRESENCE: TRAINING OF END OF LIFE CARE VOLUNTEERS
Authors: Doyle R , Nolan K , Gambles M , Roberts A , Smeding R , Mason S , Ellershaw JE 
Published: February 2014

IntroductionIn British healthcare the majority of people die in hospitals. Volunteering in this setting focuses on fundraising and practical tasks but excludes bedside care. OPCARE 9, an EU-FP7 funded project, highlighted how many European countries have utilized volunteers in caring for dying patients, providing support for patients and families, whilst re-introducing a valuable sense of ‘community’.Aim(s) and method(s)This project sought to distil existing international expertise and experience to develop and evaluate a Care of the Dying Volunteer Programme to support patients in the last hours or days of life in a hospital setting (North West of England). A bespoke training program, reflecting those delivered in the Netherlands, Germany and Italy, was developed for the UK, to enhance volunteer's existing skills and personal qualities by drawing on their life experiences. A mixed methods approach was engaged where, in addition to volunteers' longitudinal reflective assessments of the training and experience of providing support, clinical staff and patients' relatives provided qualitative and quantitative feedback where volunteers were engaged.Results19 volunteers completed the training programme and provided support to 14 patients in 6 wards. Data demonstrates that volunteers' confidence improved, that they found the training interesting, enjoyable and the content fit for purpose. Clinical staff welcomed volunteers on the whole, as did relatives, identifying the volunteers as filling an important “gap” in support.Conclusion(s)The training program proved effective in preparing volunteers. It has now been further developed in response to the findings of this research, and could be replicated in other clinical sites.
PALLIATIVE CARE FOR PATIENTS WITH ADVANCED HEART DISEASE: A RANDOMISED TRIAL OF EARLY VERSUS DELAYED INTERVENTION
Authors: Highet G , Reid J , Cudmore S , Robertson S , Hogg K , Murray S , Boyd K , Denvir MA 
Published: February 2014

IntroductionPatients with advanced heart disease have a poor prognosis despite optimal disease-focused therapy, and rarely receive coordinated holistic assessment and care planning.Aim(s) and method(s)This project integrated professional and users' views into designing a complex intervention for people with advanced heart disease. The trial combines holistic needs assessment initiated by cardiology specialists with anticipatory care planning and nurse-led care coordination in the community. In the development phase, baseline interviews with healthcare professionals (11) and 2 focus groups comprising 12 patients and 5 carers were conducted. Data were transcribed and analysed for key themes important to the rationale and design of the proposed trial. Participants refined an established, patient-held “Future Care Plan”. Recommendations about integration into routine practice informed the final study design.ResultsPatients and carers highlighted fragmentation of services, difficulty accessing specialist care and inadequate time and opportunities for future planning. Inclusion of a generic patient-held plan with prompts about current and future priorities offered as part of ongoing support from key professionals was welcomed. Professionals highlighted challenges related to uncertainty of prognosis, explaining mortality-risk to patients, starting to introduce palliative care goals and continuity of care within and across settings. They endorsed patient selection based on prognostic and clinical indicators combined with specialist-initiated care planning continued in primary care and linked to existing patient record systems.Conclusion(s)A diverse group of patients, carers and healthcare professionals identified specific concerns about improving care for people with advanced heart disease and continue to inform a feasible, responsive randomised trial that is now recruiting patients.
IS END OF LIFE CARE AT HOME FOR PEOPLE WITH DEMENTIA POSSIBLE? VIEWS OF FAMILY CARERS
Authors: Davies N , Rait G , Iliffe S 
Published: February 2014

IntroductionPeople with dementia can become confused and anxious in new environments, hospitals can be hazardous places, and transitions between settings at the end-of-life can be harmful. These reasons, together with the knowledge that most people would rather die at home, mean that there is a policy shift towards supporting people with dementia die at home.Aim(s) and method(s)The aim was to explore family carers' views of quality end-of-life-care for people with dementia. 46 in-depth interviews were carried out with family carers who were bereaved or currently caring for someone with dementia. Interviews were analysed using thematic and narrative analysis methods.ResultsPreliminary findings show families have many concerns caring for a relative in the community. The organisation of services and systems is difficult to understand and they are often left to navigate the systems alone, and become the bearer of responsibility. Some felt that having a cancer diagnosis as well as dementia increased the level of specialist services available, in particular Macmillan nurses. Families needed to trust care assistants as they may be left alone with the person with dementia and may provide intimate personal care. Finally, an individual point of contact such as a GP, social worker or admiral nurse was crucial, for information, reassurance and support, but this was often lacking.Conclusion(s)Home care is possible but families need a lot of support. Not all palliative care services are easily accessible for people with dementia and those services available are difficult to find without guidance.
HOW PREPARED ARE INFORMAL CARERS OF PATIENTS WITH ADVANCED COPD AND WHAT ARE THEIR SUPPORT NEEDS? BASELINE DATA FROM AN ONGOING LONGITUDINAL STUDY
Authors: Farquhar M , Ewing G , Moore C , Gardener AC , Butcher H Holt , White P , Grande G ,   on behalf of the Living with Breathlessness study team
Published: February 2014

IntroductionAdvanced chronic obstructive pulmonary disease (COPD), a chronic progressive condition, can lead to high informal carer-burden. We lack good evidence on the needs of carers of patients with advanced non-malignant disease and how best to support them; particularly longitudinal evidence.Aim(s) and method(s)To describe preparedness to care and support needs of informal carers of patients with advanced COPD at baseline in an ongoing longitudinal study.Mixed method baseline interviews with a cohort of approximately 100 informal carers of patients recruited from a primary care population base (East of England). The cohort forms part of the Living with Breathlessness study: a mixed-method 18-month Longitudinal Interview Study (3-monthly semi-structured interviews; flexible methodology to capture changing patient function, need and service-access, and carer need and support). Quantitative carer measures include Preparedness for Caregiving Tool and Carers Support Needs Assessment Tool analysed using descriptive statistics. Purposively sampled qualitative data analysed using framework approach and multiple-perspective case study methodology.ResultsThe results will describe the preparedness of informal carers to care for patients with advanced COPD and the relationship between preparedness and carer support needs.Conclusion(s)The Living with Breathlessness study aims to provide new evidence on the trajectories of health and social care needs and service access of patients with advanced COPD and their informal carers to inform a new framework for care and support in advanced non-malignant disease.
A QUALITATIVE STUDY TO EVALUATE THE PROCESS OF IDENTIFYING PATIENTS AT THE END-OF-LIFE IN PRIMARY CARE
Authors: Pocock LV , Wye L , Purdy S 
Published: February 2014

IntroductionIdentification of patients at the end-of-life is the first step in the care planning pathway and many general practices now have palliative care registers. There is evidence these registers largely comprise of patients with cancer, but little is known about the way in which they are populated.Aim(s) and method(s)To explore GPs' views about the process of identifying patients at the end-of-life and their inclusion on palliative care registers. Methods: A qualitative study with twelve audio-recorded, semi-structured interviews. All interviews were taped and transcribed and data was analysed thematically. The participants were qualified GPs working within practices in three counties in South West England.ResultsMost general practices included in the study now have an end-of-life register, although these include mainly cancer patients. Participants discussed the challenges in identifying patients with a non-malignant diagnosis and felt that having end-of-life discussions with these patients was more difficult. Few of the GPs interviewed utilised formal prognostic tools to assist in this identification process. The participants would like more guidance regarding prognosis from secondary care colleagues to facilitate advance care planning. District nurses are central to the process of identifying and managing patients at the end-of-life.Conclusion(s)GPs struggle to prognosticate in non-malignant disease. Cultural change, in the healthcare professions and in the wider public, is necessary before discussion about death and dying from non-malignant disease becomes normal. Further education and training is required, ideally from undergraduate level, to enable doctors to identify patients appropriately and begin these conversations.
LIVING WITH CHRONIC HEART FAILURE
Authors: Flynn S , Ellery S , Mason L 
Published: February 2014

IntroductionPatients with chronic heart failure (CHF) have a prognosis worse than many cancers. Despite national policy, those receiving specialist palliative care (SPC) remain low. This study provides an updated overview of CHF symptom burden as well as carer experience.Aim(s) and method(s)33 out-patients with NYHA class III/IV CHF were randomly selected from routine cardiology follow-up and completed the Minnesota Living with Heart Failure Questionnaire (MLHFQ) and the Hospital Anxiety and Depression Scale (HADS). Additional questions regarding advance care planning (ACP), community support and integration of SPC were asked. 16 informal carers completed a Modified Carer Strain Index (CSI).ResultsMLHFQ revealed high physical symptom burden, particularly: difficulty with hobbies (82%), dyspnoea (82%), needing rest (81%), restricted walking (79%), fatigue (79%), worry (73%) and difficulty sleeping (67%), with nearly half rating dyspnoea and fatigue as severe. 39% had anxiety and 24% depression as measured by the HADS. Evidence of ACP was poor (13%). 52% were in receipt of professional social support, 82% informal support and none received community SPC. Mean CSI score was 7 (of possible 26) with 63% having disturbed sleep, 63% finding the changes in the patient upsetting, and 56% feeling overwhelmed. All participants were supportive of an integrated SPC and CHF out- patient service.Conclusion(s)This study confirms that despite best practice recommendations, there remains unmet SPC need for patients/carers with CHF. Improved integration of services is needed to address both symptom burden and quality of life as well as ACP uptake; ultimately enhancing end of life care.
OPTIMISING PALLIATIVE CARE FOR FRAIL ELDERS IN COMMUNITY SETTINGS; PREFERENCES FOR CARE AND PALLIATIVE OUTCOMES IN THE LAST MONTHS OF LIFE
Authors: Evans CJ , Bone A , Morgan M , McCrone P , Gaoi W , Wright J , Hall S , Gomes B , Gordon E , Lindsey F , Bruni C , Taherzadeh S , Higginson IJ ,   on behalf of OPTCare Elderly
Published: February 2014

IntroductionPeople are living longer and increasingly die with frailty and complex co-morbidities. Many suffer unnecessarily because of limited recognition of palliative care needs, aggressive management and under treatment. Palliative care is advocated for frail older people with non-malignant conditions to improve assessment and treatment, but with little evidence of effectiveness.Aim(s) and method(s)Aim to determine the preferences for care and palliative outcomes for frail elders by place of death (own home, care home or hospital). Post-bereavement survey (QUALYcare) to carers (n=882) of people aged over 75 years or over via ONS. Survey examines quality of EoLC, preferences and palliative care outcomes for frail elders (malignant and non-malignant conditions). Data analysis using descriptive and inferential statistics to compare by place of death frequency of attainment of preferred place of death, prevalence of palliative outcomes, and formal and informal service use (no. and %, with 95% CI, Chi2 )Results443 (50.2%) participants mainly a son/daughter (68.2%). Majority deceased widowed (53.5%) and lived alone (41.8%). Most resided last months at home (42.9%), or care home (nursing home 22.8%; residential 12%). 35.7% died in hospital, mostly transferring from own home ()n=74/190) or a residential home (n=25/53), but few from nursing homes (15/101). Nearly half who died in hospital resided there for 1–4 weeks (45.6%).Conclusion(s)An opportunity to improve palliative care is responsiveness to timely discharge from hospital for people to die in preferred community settings. Nursing homes care for the majority of people until death, but residential care homes with no onsite nursing require greater support.
MEASURING THE QUALITY OF END OF LIFE USING ICECAP SCM: FEASIBILITY AND ACCEPTABILITY
Authors: Bailey CJ , Orlando R , Kinghorn P , Armour K , Perry R , Coast J 
Published: February 2014

IntroductionMeasuring the quality of end-of-life with generic health instruments has received criticism amongst palliative care researchers. The ICECAP Supportive Care Measure (ICECAP-SCM) is a self-complete questionnaire developed to evaluate palliative and supportive care. Using attributes involving autonomy, love, physical and emotional suffering, dignity, support and preparation, the instrument measures patients' wellbeing in terms of ‘capability’ when they are receiving supportive care.Aim(s) and method(s)To determine the feasibility of completion and the acceptability of the ICECAP-SCM amongst people receiving supportive care and their potential proxies. Using the ‘think-aloud’ technique, participants were asked to verbalise their thoughts whilst completing the ICECAP-SCM. This was followed by an exploration of the process of completion. All interviews were transcribed verbatim. Constant comparative methods were used to analyse the semi-structured data.ResultsMeasuring the end of life is complex due to the ‘adaptive normality’ that patients experience as their illness trajectory changes. Despite this, the attributes of the ICECAP-SCM offer a comprehensive overview of quality of end of life to capture and measure capability. It is easy to conduct in a hospice setting and easily understood by participants, including patients who are very near the end of life. It is perceived as an appropriate measure by patients receiving supportive care and one that is able to accurately and appropriately record their quality of life.Conclusion(s)ICECAP-SCM is feasible for use at end of life and acceptable to patients and proxies. Subject to further investigation of validity and reliability, it appears to offer a promising means of evaluating interventions at the end of life.
“YOU ONLY HAVE ONE CHANCE TO GET IT RIGHT”: CARING AT HOME FOR A FAMILY MEMBER WITH TERMINAL CANCER
Authors: Totman J , Pistrang N , Smith S , Hennessey S , Martin J 
Published: February 2014

IntroductionRelatives looking after a terminally ill family member at home often face numerous challenges. Studies into relatives' experiences of home caregiving have been criticised for their descriptive nature and lack of theoretical underpinnings.Aim(s) and method(s)This qualitative study explored the emotional challenges faced by home caregivers, and their experiences of professional services, from the perspective of existential psychology. Semi-structured interviews were conducted with 15 recently bereaved relatives who had cared at home for a family member dying of cancer. Transcripts were analysed thematically using the Framework approach.ResultsParticipants' experiences of being a caregiver and of professional support were highly varied. The analysis generated 14 themes which were organised into a framework based on Yalom's (1980) four “existential conditions”: responsibility (e.g. “being the linchpin of care”; “you only have one chance to get it right”); isolation (e.g. “being on my own”, “being held in mind”); death (e.g. “knowing but not knowing”); and meaningfulness (e.g. “finding meaning and solace in caring”). Professionals' words and actions carried great significance for relatives at this time, impacting on their experiences with respect to all four thematic categories. Healthcare services were seen as influential in helping and, sometimes, hindering them in meeting the challenges they faced.Conclusion(s)This study highlights the crucial importance for home caregivers of reliable and proactive professional support. Existential psychology provides a theoretical perspective from which to understand some of the complex emotional challenges home caregivers face and a framework which may usefully inform clinical practice and future research.