bluuebunny/crossref_metadata_2025_split huggingface dataset:
Adult specialist palliative care services and the provision of care for young adults with complex disabilities: what are the issues? findings of a national survey
Authors: Lidstone Victoria , Meagher Sarah , Baba Megumi 
Published: March 2012

IntroductionOver the last decade the number of children with life-limiting conditions surviving into adulthood has increased dramatically and is likely to continue to increase. Engaging the Adult Specialist Palliative Care (SPC) services in the care of these young adults (YA) is essential. The YA concerned commonly have complex needs, rare conditions and a mixture of cognitive and physical disabilities. For many adult SPC teams this is new territory, and there are many potential barriers to care. Provision of SPC services for these YA needs to be appropriate, available and equitable- and in practice this is often a challenge. With this in mind, we endeavoured to identify and explore the barriers to care.MethodologyWe conducted a telephone survey using a semistructured questionnaire. All adult SPC in-patient units in Wales were invited to participate. The Clinical Lead was interviewed and we explored their experiences, views and concerns regarding proving a service to these YA.Results13/14 units participated. Five of the units had had experience in caring for YA with complex needs but none had looked after more than 2. There was enthusiasm for providing service to YA but this was tempered by some important concerns. Including Education/training of staff, adequate staffing levels and funding. There were several practical issues including management of non-invasive ventilation and ventricular-peritoneal shunts that reduced general confidence. Interestingly, there was a shift in attitudes over the course of the interview, resulting in 12 of the units feeling confident to admit the hypothetical patients (with Cerebral Palsy and Duchenne Muscular Dystrophy).ConclusionThe attitudes among the adult SPC units towards the care of YA with complex needs are generally positive. There are, however, specific issues and concerns that need to be addressed in order to safely progress in developing an appropriate service for this patient group.
Survey of advice given to cancer patients by health professionals regarding fitness to drive
Authors: Kennedy Benedick 
Published: March 2012

BackgroundThe DVLA states that it is the patient's responsibility to inform them of conditions that may hinder their driving ability. The GMC outlines the duty of the doctor to ensure that the patient first understands their responsibility and second informs the DVLA of details pertinent to their condition.ObjectivesTo explore the extent that patients are being advised of their responsibilities when diagnosed or while being treated for conditions that might hinder safe driving.DesignA postal survey distributed to a cohort of 96 consecutive discharges from Haematology/Oncology ward within an acute NHS trust, regardless of their specific diagnosis.ResultsSurvey return rate of 25%. Of these only 17% indicated that they had been given any advice about driving. Only two individuals (8%) had been specifically advised to inform the DVLA. The majority of the responders decided whether to drive based upon symptoms and general wellbeing which varied from day to day. Interpretation of the survey did not allow for a correlation between driving, symptoms and medication. Despite specifically asking for a list of their medication no respondents supplied one, perhaps due to the questionnaire's design being too onerous for the cohort.ConclusionThis cohort often takes medication that can have an effect on their ability to drive safely. The proportion of patients given advice regarding their driving safety, or advised of their responsibility to contact the DVLA, was found to be low. Consequently, the authors have developed an information leaflet for patients who have been diagnosed or are receiving treatments that might influence their ability to drive safely. This is targeted at patients commenced on strong opiates or other centrally acting sedative medication within both the inpatient and outpatient settings. We anticipate a future survey examining physician understanding of their responsibilities regarding the driving advice given to patients.
Provision of palliative care services to patients with terminal respiratory disease in the community
Authors: Abdelraham Wedad , Eccles Alison , Elder Jennifer 
Published: March 2012

IntroductionThe aim of palliative care is to achieve best quality of life possible for terminally ill patients, through holistic assessment and appropriate, timely management of problems where progressive advanced disease is unresponsive to curative treatment. Terminally ill patients form a significant proportion of the acute medical take. Could this warrant extension of palliative care services in the community? Is poor discussion of patients' wishes regarding treatment and end of life care leading to unnecessary hospital admissions?Aims and ObjectivesThe aim was to identify the nature and extent of palliative care services available to patients with terminal respiratory disease, both in the community and hospital setting. We also determined if patients' preferences regarding long-term care had been addressed.MethodologyThis was a retrospective study within the Ulster Hospital. Data was collected for deceased patients on the respiratory ward between January and April 2011. These patients were diagnosed with a progressive, incurable disease with a life expectancy <1 year. We identified: inpatient specialist palliative involvement, respiratory team palliative care, preceding community respiratory or palliative team input, preadmission discussions regarding severity of disease and point of care.ResultsEleven patients with terminal respiratory disease died on the ward. 54.6% received community palliative team review preadmission. 100% received palliative care measures by respiratory staff on admission. 45.4% received specialist palliative care team input. The remaining 55% would have benefited, especially if they had been referred preadmission in the community. Only 30.7% had pre-admission discussion regarding point of care.ConclusionImproving management of terminally ill respiratory patients will require a structured multi-disciplinary approach focusing on long-term review and addressing needs within the community by respiratory and palliative care teams and GP. Early discussion regarding disease prognosis and point of care is paramount in upholding patient autonomy and reducing strain on hospital resources.
Innovation in expanding access to children's palliative care in developing countries
Authors: Marston Joan , Downing Julia , Boucher Suzanne 
Published: March 2012

BackgroundA worldwide mapping of palliative care services for children identified only 16% of countries have established paediatric palliative care (PPC) services. Most of these countries are in the developing world. In sub Saharan Africa, where the need is great due to HIV, Tuberculosis and Malaria, only South Africa and Malawi had any PPC services Two projects were initiated to expand access to palliative care services for children, based on education and advocacy, reaching five countries and impacting on development in two others.MethodA Textbook for Africa was written by PPC practitioners experienced in working with children in developing countries including a UK GP who had worked in Uganda. Using lessons learned in South Africa a Toolkit for development of PPC programmes was compiled. A Multi-professional curriculum was developed and piloted in Tanzania, Uganda and South Africa. This curriculum has also been presented in Malawi, India, Kenya and Zambia. Existing model programmes were identified and strengthened, for clinical placement of students. Further sites have been identified and strengthened for placements. An e-learning module on pain assessment and management, has been developed for further expanding education of professionals. A Virtual PPC training centre, the Baobab website was established. Communication has been initiated with university departments for integration of PPC in undergraduate training.Results240 professionals have received PPC training in five countries New programmes have been initiated PPC has been initiated in hospitals Training has expanded to three further countries.ConclusionExpansion of PPC services can be achieved through education, advocacy and collaboration even in developing countries
A consensus approach is helpful in gathering disparate evidence, and expert opinion to informational guidance for staff responsible for care after death (last offices)
Authors: Wilson Jo 
Published: March 2012

BackgroundDespite 500,000 deaths p.a. in England and Wales, the National Nurse Consultant Group (Palliative Care), National End of life Programme and Department of Health identified inconsistencies and disagreement about the care of the adult who has died.AimTo produce nationally, multi-professionally agreed guidance, that (A) was sensitive to roles/responsibilities of health/social care professionals (B) offered clarity ensuring consistency of care and appropriate training.MethodologyUsing a consensus approach, four rounds of decision making occurred (Joneset al1995). The National Nurse Consultant Group (Palliative Care) provided advice on the only clinical benchmark The Royal Marsden Guidelines (Dougherty and Lister 2008) (round one). The guidelines and advice were broken into statements. Fifty national stakeholder organisations were invited to comment, provide evidence or identify aspects of care not covered. Thirty-five organisations responded. Statements were amended where there was consensus or legal guidance (round two). The second round demonstrated areas of little evidence or consensus for example, containing leakage, identification, or preparation of the deceased. A national stakeholder event discussed these issues (third round of consensus) and outcomes were incorporated and re-circulated (round four of consensus). Over one hundred individuals representing national organisations took part in ‘Guidance for staff responsible for care after death (last offices)’, issued in April 2011, with the endorsement of the Royal College of Nursing and the Royal College of Pathologists. Feedback is that the guidance is welcomed and well received.ConclusionConsensus methodology is helpful and systematic in developing national guidance when the evidence base is disparate and poor, as it draws together professionals enabling debate of clinical knowledge (as source of evidence) and illuminates benchmarks for clinical quality.
The significance of psychosocial invervation in palliative care
Authors: Evelyn Octivia Nazziwa 
Published: March 2012

IntroductionHospice Africa Uganda offers palliative care to both cancer and or HIV/AIDS patients and their families with the aim of improving the quality of life. Palliative care is an approach that improves the quality of life of patients and their families facing problems with life threatening illness through prevention and relief of suffering by means of early identification and careful assessment and treatment of pain and other problems. Problem statement: Psychosocial issues like, lack of self-esteem, hopelessness, loss of job, lack of care and love from beloved ones, lack of school fees manifest as physical pain and the underlying cause s overlooked. The impact of the disease burden on both the family and patient need both physical and thorough psychosocial assessment and interventions of individual or family therapy.Project DescriptionIndividual and family therapy intervention helps identify the available resources and unused opportunities, which can better the patient's quality of life. Offering counselling and education with the knowledge of psychosocial care can assist in controlling patient's pain. Lessons Learnt: Psychosocial assessment and interventions if done appropriately can improve on patients' quality of life.ConclusionTherefore, patients with terminal illness do not only suffer from physical but also experience psychological and social pains that need to be addressed.
A study of perceptions of spiritual care among hospice healthcare assistants
Authors: Ashworth Jonathan , Whitfield Andrea 
Published: March 2012

BackgroundSpiritual care is a core component of holistic palliative care assessment. Previous research has explored spiritual care from the perspectives of doctors and trained nurses within palliative care units. Healthcare assistants (HCAs) have most contact with patients during an inpatient admission, and it might be argued have the greatest opportunity to deliver spiritual care. This study describes perceptions of spiritual care among HCAs.MethodQualitative semistructured interviews with HCAs in an in-patient hospice setting on their perceptions of spiritual care were conducted (n=12) as part of an undergraduate special study module. Internal approval for the study was obtained. A questionnaire was devised based on those used in previous studies. One-to-one informal interviews with HCAs took place over 3 days in July 2011. Interviews explored HCA's perceptions of spiritual care.ResultsA number of key themes were identified and will be discussed in detail. Most HCAs identified spiritual care as being part of the holistic care of patients and involves what is important to the patient. None of the respondents interpreted spiritual care as religious care only. Respondents identified their role in delivering spiritual care as spending time with, and listening to patients. Time constraints, noise, and staffing levels were identified as barriers to spiritual care. HCAs were apprehensive at the prospect of additional spiritual care training.ConclusionHCAs are ideally placed to provide spiritual care in their daily contact with patients. Often they do not recognise the crucial role that they play in the delivery of spiritual care, but rather provide spiritual care through intuition and experience. Following on from this study spiritual care training will be provided for all staff within the inpatient unit and the impact of this will be evaluated.
Spiritual assessment and provision – an audit of current practice
Authors: Taylor Emma , Gaunt Kathryn , Groves Karen , Whitfield Andrea , Baldry Catherine , Gray Dawn 
Published: March 2012

BackgroundAssessment of patients' spiritual needs and appropriate spiritual support is fundamental to holistic care, particularly towards end of life. Merseyside & Cheshire Cancer Network (MCCN) implemented spiritual awareness education in response to a spiritual care audit (2006), which demonstrated that staff felt under-skilled in this area. The results of the second cycle of this super regional audit are presented.MethodThe audit consisted of three parts a) telephone survey of spiritual care resources within specialist palliative care services (SPCS), b) web-based survey determining healthcare professionals (HCPs) perceptions of practice, c) case note audit determining actual practice.Results(A) The majority of SPCS inpatient units have a spiritual care policy; this is not the case for community services. All inpatient settings provided multi-faith quiet spaces; directories of spiritual care resources were mainly available. Inpatients had access to suitably qualified spiritual care givers more often than community settings. (B) 138 HCPs completed the survey. More than 85% assessed spiritual needs and 80% assessed religious needs some or all of the time. Less than 10% use specific assessment tools. Over 50% had undertaken specific spiritual support training. Confidence in assessment and provision of spiritual care had increased, but religious support less so. There was improvement in confidence levels of those who had undergone spiritual care training compared to those who had not. c) The case note audit revealed fewer staff recorded religious affiliation (78%) than in 2006 (91%); the recording of spiritual needs (72%) had increased (60%).ConclusionCommunity services are under-resourced with respect to spiritual care support. Confidence in spiritual assessment and support has improved since 2006 and appears to be greater in those who have undergone training. The poorest area of documentation is of religious need and on-going religious care. MCCN guidelines for assessment and provision of spiritual care have subsequently been revised.
Embedding the principles of GSF in primary care: using an ambulance/out of hours communication form as a catalyst for improved communication across the end of life pathway
Authors: Westwood Debbie , Curtis Claire , Blaine Felix , Bagshaw Kerry 
Published: March 2012

BackgroundA good communication pathway has been established through the development of an out of hours communication form, which is held at the new West Midlands Ambulance Service (WMAS) hub in Leamington spa. The information communicated on this form, primarily by GPs, enables WMAS to communicate with its crews regarding any advance care plans or special needs of patients on the palliative care register that they may be called to. The form is also sent to the out-of-hours primary care service (Harmoni) to be added to their special notes system.OutcomesThis information is often vital in enabling paramedics to make decisions on whether to transfer patients or to enable them to remain in their own home.ResultsA preliminary study showed the cost saving in transportation to the acute trust and in acute trust admissions to be £74 000 in the first six months of its introduction. A full year's evaluation is awaited and will be available shortly. In real terms this means that 25 patients were not conveyed to hospital, as a direct contribution of the register being in place and the contributions of those healthcare professionals who submitted the relevant DNAR/special notices regarding their patients. Further developments to this scheme are planned. As both WMAS and Harmoni use Adastra systems, an electronic template has been developed that will allow GPs to fill out one form that will communicate with both organisations. The plan is for this to be accessible by the acute trust, to further enhance communication about the patients' wishes at end of life. Two surgeries in Worcestershire have the electronic end of life special notes template and are currently piloting it. Work needs to begin with Adastra nationally to create interface between Harmoni Adastra and WMAS Adastra.
Audit of assessment of anxiety and depression in older inpatients with end stage COPD
Authors: Brown Davina , Athorn Katie 
Published: March 2012

BackgroundAnxiety and depression are common in patients with COPD, particularly in those with physical disability and more severe disease. It is under-diagnosed and under treated yet has profound consequences on the patient and their carers resulting in increased social isolation, heightened sensation of dyspnoea, poor treatment tolerance and increased hospitalisation. There are validated screening tools for anxiety and depression in COPD but they are underutilised. When patients present with an exacerbation to secondary care services, this becomes an ideal opportunity to assess for anxiety and depression.AimsTo evaluate our current service in assessing older (over 78 years) inpatients with end stage COPD, presenting with an exacerbation, for symptoms of anxiety and depression as recommended by NICE guidelines.MethodRetrospective clinical case note audit of eighteen older patients with an inpatient admission resulting from an exacerbation of COPD.ResultsSixteen of the 18 patients had WHO performance status of three or four indicating physical dependency. Only one patient had a prior diagnosis of anxiety and depression and was on treatment. Despite medical and nursing observational entries in the clinical notes indicating possible underlying depression and/or anxiety in seven patients (‘low mood’, ‘poor eye contact’, ‘anxious’), none of the 18 patients had a recorded mental health assessment or completed screening tool for identification and diagnosis of anxiety or depression.ConclusionDespite extensive evidence that anxiety and depression is common in patients with end stage COPD and has significant consequences on their quality of life, we are not following national guidelines and assessing for anxiety and depression in our older inpatients presenting with exacerbation. We see this as a missed opportunity to intervene to improve symptoms and optimise physical and psychological functioning towards the end of life. Our audit presents plans for service development and improvement and re-audit schedule.
How can we improve palliative care knowledge, skills and attitudes in nursing homes … with no extra staff, no extra time and no extra costs?
Authors: Harris Dylan , Jones Kim , Durham Cheryll 
Published: March 2012

IntroductionGeneric palliative care knowledge, skills and attitudes vary significantly in nursing home staff. A previous education model of 1 day study days (provided by our palliative care team) did not seem to have a lasting impact: knowledge/skills were not retained; high staff turnover meant ‘educated’ staff were lost, and, the focus on palliative care faded behind other priorities.MethodAn alternative model has been successfully piloted in three homes, with four core elements: (1) Little but often: a short teaching session monthly which representatives from each home attend. This reduces the impact on the rest of the working day so increasing attendance, keeps palliative care on the ‘radar’ and accommodates a high turnover workforce. (2) Focus on generic palliative care skills: communication; recognising dying; End of Life pathway. (3) Patient focused and reflective: each session is built around reflection on patients at the homes, previous difficult conversations form the basis of communication skills role-play. (4) Ownership by nursing home staff: who set the learning objectives, identify a link nurse at each home and maintain a ‘resource box’ for use with palliative patients.ResultsThis education model has had a direct impact on: (a) confidence in core palliative care competencies (self-rated by the attendees); (b) clinical care (using use and completion of the end of life care pathway as a marker); (c) advance care planning with care home residents; (d) referrals to specialist palliative care (which have become notably more appropriate and timely but with an overall reduction in workload at these homes as they are now competently delivering generic palliative care themselves).Results/ConclusionThis model is cost neutral, time efficient (volume of work for specialist palliative care from these homes has actually reduced) and has had a direct effect on improving confidence and skills in generic palliative care.