bluuebunny/crossref_metadata_2025_split huggingface dataset:
DIFFERENT DYINGS: LIVING AND DYING WITH CANCER, ORGAN FAILURE AND PHYSICAL FRAILTY
Authors: Kendall Marilyn , Carduff Emma , Lloyd Anna , Kimbell Barbara , Cavers Debbie , Buckingham Susan , Boyd Kirsty , Grant Liz , Worth Allison , Pinnock Hillary , Sheikh Aziz , Murray Scott A. 
Published: February 2014

BackgroundRecent controversy around the Liverpool Care Pathway has highlighted the need to listen to patient and carer perspectives. Better understanding of how different patient groups perceive their deteriorating health and approaching death can inform palliative care developments for all conditions.AimTo establish whether there are typical narratives of living with and dying from a variety of progressive conditions, that might provide insights into how best to provide effective, patient-centred care.MethodsWe used a narrative framework to synthesise eight methodologically comparable, longitudinal, interview studies undertaken by our research group. We examined the narratives of people dying from cancer (lung, glioma and colorectal cancer), organ failure (heart, liver and chronic obstructive pulmonary disease) and physical frailty, in socioeconomically and racially diverse populations in Scotland.ResultsThe dataset comprised 828 in-depth interviews with 156 patients, 114 family caregivers and 170 health professionals. The cancer narratives typically had a clear beginning, middle and anticipated end. They gave a well-rehearsed account of the illness, with the dual themes of hope for recovery alongside fear of dying. In contrast, people with organ failure struggled to pinpoint when their illness began, or see meaningful patterns between acute events. Fewer spoke about death, hoping instead to avoid further deterioration. Some attributed their poor health to ‘old age’, others struggled to identify any specific illness. Frail older people were frustrated by their progressive loss of independence, fearing dementia or nursing home admission more than dying.ConclusionsThe typical cancer narrative is very different from those in frailty or organ failure. Palliative care as a concept may be too inextricably linked to imminent death to be acceptable and appropriate for these patients. We must diversify palliative care provision to meet the range of holistic needs of all patients approaching the end of life.
BEFORE THE TIPPING POINT: USING A COMPUTER RECORD SEARCH TO AID IDENTIFICATION OF PATIENTS WITH PALLIATIVE CARE NEEDS IN PRIMARY CARE
Authors: Mason Bruce , Boyd Kirsty , Campbell Christine , Steyn John , Kendall Marilyn , Murchie Peter , Murray Scott 
Published: February 2014

BackgroundPrimary care is involved in the delivery of end-of-life care for approximately 600,000 people per year in the UK. Many patients who might benefit from proactive interventions at this time are not receiving them because they are not being identified as having “palliative” needs. The use of information technology currently in place in general practices provides opportunities to enhance identification of patients with such needs.AimsTo develop and test a primary care electronic record search to identify patients with palliative care needs who are not already on a palliative care register. To assess the feasibility of such a search and its acceptability to primary care professionals.MethodsA computer record search was developed then tested in a sample of practices in two Scottish health boards. Quantitative and qualitative data was collected to test the appropriateness of the search results and professional attitudes towards the method.ResultsThe search was run in 10 practices with a total patient population of 83,229 and 69 health professionals present. For each practice, the search generated matches equal to 0.75% to 1.6% of the practice patient population. 30–60% of the patients returned by each search were considered to be at risk of dying by at least one GP. GPs struggled to suggest what additional care they could offer and found the term “palliative care” unhelpful. Although GPs found the search to be a useful tool they expressed reluctance to increase the size of their palliative care register.ConclusionsThe search successfully made GPs aware of patients who have palliative care needs. However GP attitudes towards palliative care meant that they lacked appropriate actions to take. This computer search is potentially useful but only if it can be paired with actions that can be taken without requiring use of the term “palliative care.”
AN INTEGRATED MODEL OF SPECIALIST PALLIATIVE CARE (SPC) FOR CYSTIC FIBROSIS (CF)
Authors: Quibell Rachel , Booth Zoe , Doe Simon , Bourke Stephen J 
Published: February 2014

BackgroundSpecialist palliative care (SPC) for patients with Cystic Fibrosis (CF) is complex as they have severe symptoms requiring active CF treatment and some die on a transplant waiting list, which may be a barrier to referral for SPC. We describe a model of care whereby the SPC team is part of the CF team providing SPC alongside CF care.ResultsOf 270 CF patients, 20 (9 male; mean age 32.3 (19–47) years) had SPC input over 2 years. They had advanced CF (mean FEV125%; BMI 19.7); 9 patients died, 3 underwent successful transplantation and 9 are in ongoing care (2 on active transplant list). Prominent symptoms on assessment were dyspnoea (85%), cough (80%), pain (75%), nausea or vomiting (75%), fatigue (55%) anxiety (50%) and low mood (30%). SPC interventions included drug advice, non-drug measures for management of symptoms (relaxation, massage, acupuncture), practical provision of equipment, activity based therapy, financial advice, and psychosocial and spiritual support. Deaths were in hospital after a short final exacerbation. SPC have been involved in the end of life care of all that died. Evaluation showed that all of the CF team felt that SPC should be a part of the team, and rated SPC highly (mean score 4.1 on a 5 point scale). The CF Team perceived that all patients had found SPC helpful or very helpful. Only one patient awaiting transplant declined SPC input.ConclusionsThis model is successful in overcoming barriers to SPC and is highly rated by the CF team. The SPC team have developed their knowledge of CF, and find it helpful to meet patients and families earlier. This integrated model of SPC is applicable to other specialist diseases.
USING THE “PATIENT DIGNITY QUESTION” AS A PERSON-CENTRED INTERVENTION FOR PATIENTS WITH PALLIATIVE CARE NEEDS IN AN ACUTE HOSPITAL SETTING
Authors: Gaffney Marion , Johnston Bridget , Buchanan Deans 
Published: February 2014

BackgroundThe aim of palliative care is to improve the quality of life of patients who are living with a progressive, life threatening illness. In order to achieve this, the patient needs to be cared for as a person. However, current research indicates that this is not always achieved in the acute hospital setting.AimThis feasibility study set out to determine the practicalities and effectiveness of using the ‘Patient Dignity Question’, (Chochinov 2010) an intervention derived from extensive, empirical research on dignity near the end of life, in order to enhance person-centred care.MethodsA mixed methods feasibility study using both patient reported outcomes measures (person centred climate questionnaire PCCQ; Patient Dignity Question questionnaire (developed by Chochinov et al), and semi-structured interviews was adopted underpinned by pragmatic theory. The study was conducted in a large teaching hospital with a purposive sample of nine patients and five healthcare professionals.ResultsThe results of indicate that is feasible to carry out this type of study for people with palliative needs in the acute care setting. Adopting a mixed methods approach was effective in answering the research questions and meeting the study aims. The primary outcome measure was effective in determining the person-centred nature of the hospital climate. However, it was unable to determine if the ‘Patient Dignity Question’ had a direct influence on this.ConclusionStudy participants were willing and happy to take part in this study despite their illness and environment. Participants found the ‘Patient Dignity Question’ and summary both useful and practical. They described it as an intervention that can help to improve the care patients receive and help them feel valued as an individual. A funded study with 30 patient, 30 family members and 30 health professionals is now being undertaken with a before and after trial design.
ATTITUDES AND EXPERIENCE OF TRAINEES IN PALLIATIVE MEDICINE TO ABDOMINAL PARACENTESIS
Authors: Hitchens Morwenna , Bush Harriet 
Published: February 2014

BackgroundAbdominal paracentesis is widely used as a symptom control measure for malignant ascites. In the UK, ultrasound guided insertion has become standard practice in some specialist palliative care units. This has resulted in variation in practice between units, inconsistent training opportunities and perceived difficulties for trainees to achieve procedural competencies.AimThe aim of this study was to establish the views of Palliative Medicine trainees on their experience, competency and the role of ultrasound in paracentesis.MethodsAn online questionnaire was sent out to all trainees registered with The Association of Palliative Medicine. 81/230 trainees responded (35%). 72 % were in their final year of training.ResultsIn the preceding 12 months 75% of trainees had performed paracentesis on less than three occasions, 39% had not put in a single drain. 49% of trainees anticipated difficulties in achieving the required procedural competence by the end of training due to fewer opportunities, often having to arrange specific clinical attachments to meet the training objectives. In 33% of units all cases were ultrasound guided yet only 5/81 trainees were trained to use ultrasound. 78% trainees felt competent to insert a drain without ultrasound although 39% believed all drains should be placed under ultrasound guidance.ConclusionsParacentesis is a mandatory skill required to complete training in Palliative Medicine. This study has shown that many units only perform ultrasound guided procedures and yet only 6% of trainees are trained in this technique. Therefore there are fewer opportunities for training as evidenced by 39% of trainees not performing paracentesis within 12 months. Most still feel competent to perform paracentesis but this study raises questions regarding maintaining procedural competency and who will train the trainees in the future. If the trend towards ultrasound guidance continues it should become a skill all trainees must learn.
COMPETENCY BASED TRAINING IN THE NURSING HOME SETTING: PROMOTING QUALITY END-OF-LIFE CARE
Authors: McLaughlin Dorry , Hasson Felicity , Foster Sue , McCorry Noleen , Kernohan George , McIlfatrick Sonja , Watson Max , Waldron Mary 
Published: February 2014

BackgroundThe importance of good end-of-life care for older people in nursing homes is recognised internationally and competence based training has been highlighted to improve palliative care provision in this care setting.AimThis aim of this study was to evaluate a three day competency based, Regional Palliative and End-of-Life Care Learning and Development Programme targeted at nursing staff (n=1330) working within nursing homes (n=266) in Northern Ireland.MethodsBoth quantitative and qualitative methods were used in two key phases. In Phase 1 participants were asked to complete the Regional Palliative and End-of-Life Care Competency Assessment Tool before and after the training. The content of the programme was mapped to the domains of this tool. In Phase 2, following the programme, seven focus groups with registered nurses (n=29), telephone interviews with managers (n=8) and one focus group, which two managers chose, took place.Results619 participants completed the programme and 95.3% (n=590) completed the competency tool before and after the training. Descriptive statistics show participants self-reported a significant increase in core palliative care knowledge and skills across all five competency domains after training. Common themes emerging from focus groups and telephone interviews were: ‘Outcomes of attending the programme’, programme delivery and issues of access', challenges to palliative care in care homes' and ‘enablers to palliative care in the nursing home setting’.ConclusionsThis example of training mapped to a competency tool may have relevance given other national and international competency frameworks which exist. Factors relating to attrition have also been identified.
EXPLORING HOSPICE NURSES' EXPERIENCES OF IDENTIFYING CHILDREN'S BEREAVEMENT NEEDS BEFORE THE DEATH OF A PARENT
Authors: Clipsham Laura , Vostanis Panos , O'Reilly Michelle , Faull Christina 
Published: February 2014

BackgroundNICE guidance and the National Service Framework for children recommend healthcare professionals consider the whole family's needs prior to a parent's death. Despite evidence that in the terminal phase of a parent's illness children experience elevated levels of stress and demonstrate distress at their parents impending death, there is little work focusing on how their needs are identified.AimsTo explore how hospice nurses identify children's bereavement needs (aged 18 years or younger) when they have a terminally ill parent, and their experiences of supporting children.MethodsIndividual semi-structured interviews were conducted with ten hospice nurses recruited from a single inpatient unit to explore their practice of identifying the bereavement needs of children of terminally ill patients, and their experience of providing support to these children. Transcripts were analysed verbatim and coded thematically.ResultsParticipants identified multiple factors impacting upon children's bereavement, but felt their knowledge was limited. The following key themes emerged:Perception of need – indicated by distress in the well parent, changes in a child's behaviour, or when safeguarding concerns arose.Communication – nurses expressed concern talking directly to children may cause distress.Barriers to provision of support – these included parents blocking discussions, variable supportiveness of colleagues, lack of time and nurses not feeling ‘child-orientated’.Personal experiences of illness and bereavement – nurses related to their own experiences when considering children's needs.Impact on nurses – caring for patients with children was associated with negative emotions. Many felt unprepared, and some expressed concern about letting children down.Education – nurses wanted further training and easily accessible resources.ConclusionsNurses identified professional and personal challenges in recognising and addressing children's bereavement needs and their requirements for support. Further work is needed to develop strategies to overcome these challenges, and address the requirement for additional training.
HELPING PATIENTS TO DIE AT HOME: CARERS' VIEWS ON HOME CARE WITH THE MIDHURST MACMILLAN SPECIALIST PALLIATIVE CARE SERVICE
Authors: Hughes Philippa , Winslow Michelle , Ingleton Christine , Noble Bill 
Published: February 2014

BackgroundThe Midhurst Macmillan Specialist Palliative Care Service (MMSPCS) is a UK, medical consultant-led, multidisciplinary team providing care in the home, community hospitals and care homes. Care includes specialist interventions. Case data review shows that over two thirds of patients referred to the service die at home.Aim and MethodsAs part of a multi-method evaluation study we conducted a survey of bereaved carers of patients referred to the MMSPCS, using the Views of Informal Carers- Evaluation of Services (VOICES) self-complete postal questionnaire.ResultsResponse rate was 40.5% (102/252). 83%of respondents reported services at home to be excellent or good, and 78% reported receiving as much support as they wanted. 74% reported receiving care from two or more nursing services. 43% of respondents had given up or reduced their work to look after their relative. Confidence of informal carers in looking after their relative varied, with only 32% reporting feeling very confident. 49% reported the caring experience as rewarding, 7% as a burden, and 28% equally balanced (14% other replies/missing). There were 20 comments from those who found it rewarding: including on the value of maintaining family life, deepening relationships, enabling a wished for death at home, and on the tiring and difficult nature of providing care. There were five comments from those who found it a burden; including feeling they had not provided good enough care, and feeling frightened or sad. There were 25 comments from others, including feeling glad to provide care while acknowledging the sadness and anxiety of this; rejecting the terms ‘burden’ and ‘reward’; and the challenges and responsibility involved.ConclusionGood services are key to care at home, but also key are informal carers at home. Carers report difficulties and challenges alongside positive experiences at home, reflecting the complexity in this area.
Carer and Health Care Professionals' Views on caring for dying patients in their homes in North Wales
Authors: Pottle Jacqueline , Neal Richard , Poolman Marlise , Hiscock Julia 
Published: February 2014

BackgroundPatients express a preference to die at home. This has influenced National Policies, with the focus in health care to support as many patients to achieve this as possible. Annual deaths are expected to rise, but less than one in ten people achieving home deaths before 2030.3North Wales has a wide geographical area with services to support palliative patients varying across the different areas. This research will enable effective methods of support and types of interventions in North Wales to be identified; and thus be a starting point towards increasing the numbers of patients able to die at home. The results will be helpful to other areas nationally and internationally.AimsTo understand the experience of caring for dying patients at their own home in North Wales, and clarify which aspects enabled a ‘good death’ at home for patients who expressed a wish to die in their own home. To identify which support services were involved and to clarify the interventions that enabled or hindered a patient to remain at home to die.MethodsA multi perspective qualitative study of semi structured interviews of 18 bereaved carers and 18 Health Care Professionals involved in patients' care to die at home. All interviews were recorded and transcribed.ResultsThematic analysis of information has taken place and the benefits and challenges of caring for dying patients in their own home have been explored.ConclusionRecommendations regarding views on effective support mechanisms and interventions will be highlighted and provide guidance on supporting patients to die in their preferred place of home.
PALLIATIVE AND END OF LIFE CARE IN PRISONS IN GREAT BRITAIN AND NORTHERN IRELAND – EXPERIENCES OF PHYSICIANS WORKING IN SPECIALIST PALLIATIVE CARE SERVICES
Authors: Fletcher Andrew , Payne Sheila , Waterman David , Turner Mary 
Published: February 2014

BackgroundThe End of Life Care Strategy (2008) states: ‘high quality services should be available in all locations, including prisons,’ and recommends collaborative working across the prisons, coronial, healthcare and specialist palliative care services.Aims and MethodsThe aim of the study was to explore experiences of physicians working in specialist palliative care, in caring for prisoners and their views about facilitators and barriers, to providing high quality care. An online questionnaire was distributed to members of the Association of Palliative Medicine of Great Britain and Ireland.ResultsTwo hundred and thirty-six completed questionnaires (23.3% response rate). One hundred and thirty-seven (58.1%) respondents had experience of caring for prisoners. The most common reasons for review included pain control (23.6%), symptom control (27.6%) and end of life care (20.5%). The interface between services in prisons was identified as complex by 173 (73.3%) of respondents–impacting on delivery of care, requiring a comprehensive interface between staff inside and specialist palliative care services outside the prison. Ninety-six (39.4%) respondents were willing to be involved in the delivery of an education programme and 128 (54.2%) were keen to learn about prison structures and healthcare. Ninety respondents were unsure if end of life care tools could be implemented within prisons.ConclusionsThere are consistent perceptions regarding factors that enhance palliative and end of life care in prisons. These include the need to develop working relationships, and enhance communication, within the prison as well as between the prison and outside agencies. The development of education and research, management of public perceptions and the review of policies, procedures and legal issues were highlighted. There is willingness by physicians to engage with the prison service to develop and support palliative and end of life care. Strategic development at local and national level is important due to the unique characteristics of each prison.
FRAILTY NARRATIVES TOWARDS THE END OF LIFE
Authors: Lloyd Anna , Kendall Marilyn , Murray Scott 
Published: February 2014

BackgroundPalliative care services have widened beyond cancer in recent years yet frail older adults rarely receive such services. There is a need to understand the multidimensional end of life experiences of this group in order to assess how or if a palliative approach could be beneficial.AimsTo describe the changing multidimensional experiences of frail older adults towards the end of life.Methods76 in-depth qualitative interviews were carried out with 13 core participants and their key formal and informal carers repeatedly for a period lasting up to 18 months. Core participants were cognitively intact, community dwelling older adults considered to be moderately or severely frail using a clinical frailty scale. The interviews were participant led, audio-recorded and fully transcribed. The ‘voice centred relational’ narrative method, incorporating analyses of multidimensional experience, was used to compile case studies.ResultsNarratives of frail older people approaching the end of life illustrate patterns of multidimensional experience that differ from the end of life trajectories of other groups. All participants experienced physical decline however three possible patterns of psychological, social and existential experience emerged. These were: stable; regressive and tragic; or regressive; according to the capacity to hold on to core values, and maintain a sense of self and of belonging in the world. Areas of greatest unmet need focused around psychological, social and existential dimensions while provision of care mainly focused on physical need.ConclusionThe current palliative care model may not be appropriate to meet the needs of frail older people. Considering the core values and sense of self that are involved in adjusting to and coping with losses experienced at this stage may help to highlight where best to alleviate psychological, social and existential distress as frail older people reach the end of life.