bluuebunny/crossref_metadata_2025_split huggingface dataset:
Causal attributions of multiple sclerosis among black Caribbean and white British people with MS
Authors: Goddard Cassie , Silber Eli , Higginson Irene , Rachel Burman , Diana Jackson , Koffman Jonathan 
Published: March 2012

BackgroundThe prevalence of multiple sclerosis (MS) is thought to be increasing among UK minority ethnic groups but little is known about their illness perceptions of its causation. These may influence attitudes to service use.AimTo explore meanings people severely affected by MS attribute to their disease, and understand how these may be culturally patterned.MethodSemistructured qualitative interviews were conducted among black Caribbean (BC) and white British (WB) people with MS (PwMS) with an EDSS of ≥6.0 (severe disease). Data were analysed using the framework approach.Results15 BC and 15 WB PwMS were interviewed with mean ages of 46.6 and 56.9 years respectively. Causal attributions were complex, with most PwMS reporting multiple explanations to account for their MS. PwMS from both ethnic groups provided ‘logical and scientific’ accounts; these included genetic/viral influences, stress, the environment and lifestyle factors. Familial history of MS was specific to WB PwMS, while some BC PwMS referred to bodily insults, for example injuries. Traditional ‘supernatural’ attributions departed from a biomedical perspective and included religious challenges or tests from God. Although these two views were cited more frequently by BC than WB PwMS, the notion of punishment was not always fully endorsed by them. While ‘fate or destiny’ accounted for another lay attribution specific to BC PwMS, where MS was believed to have been written into their life plan, a number of PwMS from both groups acknowledged the possibility of randomness MS causation.ConclusionThe authors identify, for the first time, a range of illness attributions PwMS use to explain their illness that depart from a biomedical model, and are culturally specific. ‘impeccable assessment’, central to the principle of specialist palliative care and neurology, must incorporate cultural relativism; this identifies and values social difference which maybe central in enhancing concordance with treatment and care.
Observing district nurses roles in palliative care: an understanding of aims and actions
Authors: Walshe Catherine , Payne Sheila , Luker Karen 
Published: March 2012

BackgroundResearch into professional roles in palliative care provision mostly investigates professionals stated care aims and their own descriptions of care given. There is little detailed knowledge about the actions of professionals. This can hamper efforts to influence care outcomes, if the processes that precede them are not well understood.AimTo investigate the role of the district nurse in palliative care provision, with a particular focus on observational exploration of their role and practice in providing patient care.MethodsA longitudinal qualitative ethnographic design, comprising observation of district nurse/palliative care patient/carer encounters over time, and post observation interviews with patients, carers and district nurses (DNs). Patients were sampled from 12 DN team caseloads across three primary care organisations. Observations and interviews were audio-recorded and transcribed. Iterative data analysis comprised familiarisation, coding and categorisation using techniques of constant comparison to generate typologies of concepts. The study received all necessary ethics and governance approvals.Results17 DN/patient encounters were observed (n= 11 patients, 8 nurses) with 23 post observation interviews (11 DN, 12 patient/carer). Key themes include ‘planning for the future’ and ‘caring in the moment’. DNs emphasised the importance of advance planning and the impact current relationship building had on future care. However, observations revealed scant overt advance care planning initiated by either DNs or patients. Most care focused on current problems, primarily physical symptoms. Patients and carers valued care received citing district nurses warmth and efficiency, but were often unaware of potential future DN roles.ConclusionsThere is an apparent mis-match between district nursing aims and actions. It is critical to meet patients current care needs, but the lack of patient involvement in advance planning may have an impact on meeting preferences for place of care and death.
A feasibility study of pro-active cancer care in the community
Authors: Murray Scott , Kendall Marilyn , Barclay Stephen , Momen Natalie 
Published: March 2012

BackgroundTwo million people in the UK live with cancer: this will double by 2030. Research which tests a primary care model of supporting this growing population from diagnosis to palliation is urgently required.AimTo assess the feasibility of active follow-up of patients in primary care from cancer diagnosis onwards.MethodsA two phase, mixed methods, action research study. An electronic Cancer On-going Review Document (CORD) was first developed by patients and professionals, for use with all patients with a new diagnosis of cancer. This was evaluated through record review, qualitative interviews with patients, family carers and health professionals, and documentary analysis of the CORDs. Interviews were recorded, transcribed and entered into NVivo for thematic analysis, and numeric data analysed using SPSS.ResultsThe records of 106 patients from 13 practices were examined, and 45 interviews conducted. CORDs were usually used only once (range 1–9 times), but when used prompted clear and often graphic documentation of multi-dimensional needs and understanding. General Practitioners felt it helped to structure consultations and cover psychosocial areas. Few discussed the review openly with patients, and the template was often completed after the consultation. Patients and carers valued a palliative care approach from primary care, which was seen to offer holistic care and close relationships, and from early in the disease trajectory.ConclusionsThis tool is unintrusive and patient centred, promoting continuity of care and holism. If more on-going care for cancer patients is to be delivered in the community in a chronic disease model, this template may be useful but needs to be better integrated and incentivised within practice IT systems. A care framework akin to other chronic illnesses such as Diabetes, which uses specific templates is possible in primary care, but needs to be integrated and prioritised.
End of life care for people with dementia: an intervention to promote collaborative working between care home staff and healthcare practitioners
Authors: Nicholson Caroline , Goodman Claire , Mathie Elspeth , Amador Sarah , Baron Natasha , Machen Ina 
Published: March 2012

BackgroundIn England most care homes have no on-site clinician and rely on primary healthcare for end-of-life (EOL) support. The Evidem EOL study focused on end-of-life care for elders with dementia in care homes. Phase 1 found high levels of uncertainty among care home and primary healthcare staff around anticipating and supporting residents dying with or from dementia. This paper presents the piloting of a modified appreciative inquiry (AI) approach within Evidem EOL Phase 2 to facilitate end-of-life care for people with dementia in care homes.MethodsA modified AI approach (a strength-based change management tool) was implemented in three purposively sampled care homes over 6 months (January–July 2011). A self-selected team comprising care home staff, a general practitioner and a district nurse from each care home participated in the modified AI intervention: (3 one-hour AI meetings and on-going researcher support.) Through this intervention the teams developed and implemented context specific, participant driven strategies to support EOL care for people with dementia.ResultsWhile evaluation is on-going, preliminary findings from thematic analysis of interviews with participants and collected data on use of emergency/acute services reveal: (1) High acceptance of the intervention, creating rapid engagement between participants who did not have a history of working together (2) Greater understanding and appreciation of respective roles and increased collaboration within the team (3) Improved EOL Care evidenced by increased advanced care planning; reduced number of emergency call outs and hospital admissions; increased staff confidence in talking to residents and family about end-of-life issues and wishes.DiscussionLong-term sustainability of the intervention remains to be tested. However preliminary findings suggest modified AI is an effective tool to promote integrated working between care home and health services and to improve EOL care for people with dementia in care homes.
The experiences of palliative lung cancer patients participating in a clinical trial
Authors: Sivell Stephanie , Noble Simon , Harrop Emily , Byrne Anthony , Moore Barbara , Nelson Annmarie 
Published: March 2012

BackgroundPalliative care lung cancer patients are under-represented in oncology trials and very little is understood about their experiences of participating in clinical trials. FRAGMATIC is the largest lung cancer study in the UK and is investigating the effects of Fragmin (a self-injected anticoagulant) in patients with lung cancer. This current study (QUALFRAG) is a qualitative substudy of the FRAGMATIC trial.AimsTo explore patients' experiences of participating in FRAGMATIC and the impact on quality of life, while at the same time collecting data on patients' experiences of advanced lung cancer.MethodsSemistructured interviews will be held with two groups of 6–10 patients (12–20 patients in total) recruited from the intervention and control arms of the FRAGMATIC trial.AnalysisInterviews will be analysed using Interpretative Phenomenological Analysis (IPA) to identify emergent themes that reflect participants' lived experience.ResultsData will be presented on patients' experiences of participating in the FRAGMATIC study, symptom progression and (where relevant) how tolerable Fragmin is.ConclusionsThe results of this study will help future studies target appropriate symptom control issues in palliative lung cancer patients and inform future healthcare management with respect to the treatment and prevention of cancer associated thrombosis.
Supporting people with learning disabilities who are affected by a relative or friend with cancer
Authors: Tuffrey-Wijne Irene 
Published: March 2012

IntroductionAround 2.5% of the population have learning disabilities (LD). Most people with LD will be affected by cancer of family or friends at some point in their lives. Their support needs are insufficiently understood.AimsTo explore the experiences and support needs of adults with LD who have a relative or friend with cancer. To make recommendations for practice.MethodsTwenty-two people with LD took part in focus groups and face-to-face interviews. All participants had experience of having a close relative/friend with cancer. The groups were co-facilitated by two co-researchers with LD, using a range of methodologies (including story-telling, role play and Nominal Group Technique) to extract participants' experiences and views. Data were analysed using content analysis.ResultsBeing protected from information (as many participants were) negatively affected their coping. Participants worried about their relative/friend's illness and the impact on both the patient and on themselves; but had not shared their worries or questions with others. Several participants had become carers themselves. The greatest need was for ‘someone to talk to’; this need was not met by either families or professionals. There was a lack of understanding about cancer, and a lack of access to cancer information; participants wanted such information. However, accessible information materials were viewed as less important than access to someone who could explain.DiscussionThe needs of people with LD who are a relative/friend of someone with cancer are often overlooked. This group does not ask for support, and therefore pro-active support is needed from professionals. This includes emotional support as well as informational support.
What shapes and influences preferred place of care at end of life?
Authors: Naismith Jane , Dunn Virginia , Pegrum Helen 
Published: March 2012

Research shows that over half the population would like to die at home, however only 20% achieve this.(1) This affects the quality of end of life care and bereavement outcomes. Numerous studies have examined place of death and its' predictors, however there is little published information about the factors that shape and influence the decisions patients make about their preferred place of care (PPC) at the end of life, or about which factors that influence and change these decisions over time.AimsTo identify the factors, from the individual's perspective, that influence and change preferences for PPC.Design/resultsA descriptive explorative qualitative longitudinal study was undertaken with ethical approval. Four participants were recruited; all were female, aged 55–81 years. All participants had chosen a PPC, however they all wanted to remain at home for as long as possible. Only one achieved their PPC. Factors that influenced choice of PPC wereBecoming ill and realising that they were dying.A desire to remain autonomous and to retain a sense of dignity and control.Previous experiences of a location.Care at home being intrusive.Not wanting to burden family with care.The need NOT to compromise close relationships.DiscussionParticipants found discussion of PPC difficult made and assumptions for their carers. They had had little or no information about choice of PPC and none had recorded it in writing. There is a complex interplay of emotional and practical factors that influence PPC. Clear decisions about PPC were not made until dying was imminent. PPC should be viewed as a dynamic decision requiring regular reassessment. This research also demonstrated the difficulty of recruiting participants due to it being considered over burdensome by both patients and healthcare professionals, who adopted a gate-keeping role.
Using consensus methodology to identify events that could trigger holistic assessment in severe COPD
Authors: Cawley Declan , Oliver David , Billings Jenny , Kendall Marilyn , Pinnock Hilary 
Published: March 2012

BackgroundCurrent policy demands that ‘quality’ end of life care should be universally available irrespective of illness but evidence on how this should be done in non-malignant disease lacking. The ‘lack of biographical disruption’ and uncertainty of the COPD disease trajectory makes this difficult within a service model predicated on identifying ‘transitions’ to palliative care. Therefore the authors require an approach that will capture the ‘needs’ of individuals with severe COPD and their carers, irrespective of which professional arena they come into contact with.AimsTo identify ‘events’ within the life-long disease trajectory of COPD, that can trigger an assessment of the holistic (supportive and palliative care) needs of patients with severe disease and their carers.Method1. Secondary analysis of transcripts from the ‘Breath of Fresh Air’ study (Pinnocket al.,BMJ2011; 342: d142) to identify candidate ‘events’ for consideration as triggers. 2. Consensus meeting of health and social care professionals to characterise a ‘trigger’ and prioritise candidate ‘events’ using a nominal group technique.ResultsEight candidate ‘events’ were identified: requesting a ‘Blue badge`, home adaptations, hospital admissions, increasing burden of disease, housebound, failure to attend an appointment, shifting priorities of care, increasing carer burden. The consensus meeting affirmed that a successful ‘trigger’ should be visible to patient/carer/health or social care professional, meaningful to all stakeholders involved, actionable (i.e amenable to an intervention). The candidate ‘events’ that reached consensus (>75% agreement) were requesting home adaptations, hospital admissions and being housebound.ConclusionThe multi-disciplinary group agreed the key characteristics required for an effective ‘triggers’, and prioritised three candidate events. These need to be explored with COPD patients and their carers, to understand their acceptability, attributability, reliability, feasibility and relevance of triggers in delivering quality care for people with severe COPD and carers.
What is the impact of training nurses in resuscitation decisions in advanced illness?
Authors: Faull Christina 
Published: March 2012

BackgroundThe East Midlands DNA-CPR form may be completed by a ‘suitably experienced nurse’. The BMA and RCN statement (2007) indicated that nurses may make such decisions, but ambiguity about training and governance remains. Senior community nurses, with previous advanced communication skills training, attended training using the e-ELCA Discussing ‘do not attempt CPR’ decisions. Subsequently nurses could take on the role of signing DNA-CPR forms if agreed by their employer.AimsTo evaluate the impact of the training on practice and confidence. Methods: A questionnaire was sent 4 months after training and analysed descriptively.Results13 of 36 questionnaires were returned. Those with patients on the LCP now completed the DNA-CPR form unless there were difficult dynamics. All completed it for any patient requesting DNA-CPR and 77% completed it with some patients for whom there was no chance of success from CPR. Where such patients or relatives were not in agreement the nurse sought involvement of a doctor. All nurses felt more confident to discuss the topic of CPR and much more confident in discussing a DNA-CPR decision for a dying patient (‘informing’ not ‘asking’), and in dealing with the reactions. Only one nurse reported more difficulties, arising with GPs who were less confident. None of the nurses had had their signature queried by a colleague or relative and many GPs were appreciative of this role. Only two nurses wanted formal assessment of their competence. Some considered assessment to add value if it enhanced the confidence of others in them. 55% wanted on-going CPD, considering this more likely than assessment to quality assure their practice.ConclusionsThe training increased confidence and has changed patient care. Senior nurses appear to assess the risk of their decision making role well and act appropriately. The role appears to have been well accepted.
Exploring issues for doctors surrounding the withdrawal of NIV at the request of patients with MND
Authors: Rowe-Haynes Cassy , Faull Christina , Oliver David 
Published: March 2012

BackgroundNICE guidance recommends that non-invasive ventilation (NIV) should be considered for patients with motor neuron disease (MND). The guidelines acknowledge further research is needed on NIV withdrawal. There is little evidence focusing on the issues doctors face when withdrawing NIV in this group.AimsTo identify issues and challenges doctors have encountered when withdrawing NIV in MND patients.MethodsAn electronic questionnaire was sent to 1000 members of the Association of Palliative Medicine. Participants rated how practically, emotionally and ethically challenging they found the process of NIV withdrawal. They were invited to expand on issues using free text.Results134 responded – 95% were doctors working in various settings, 62% were consultants. 60% had been directly involved in withdrawal of NIV in MND patients. Only 5% used a protocol or guideline. Most found the process of NIV withdrawal practically, emotionally and ethically challenging. The percentage scoring 5 or more on a likert scale (10 =very challenging) were 70% for practically challenging, 75% for emotionally challenging and 60% for ethically challenging. 12% found NIV very emotionally challenging scoring 10 on the scale. Thematic analysis of the free text revealed some common difficulties. Lack of guidance on practical aspects of withdrawal, poor advance care planning and the need to support all involved to prevent conflict were recurrent themes. Statements relating to the emotional burden were diverse but suggest a significant personal impact is felt by many palliative care doctors.ConclusionsThe withdrawal of NIV in patients with MND appears to pose multiple challenges to palliative care doctors involved. Development of guidelines and a clear ethical statement of conduct may help with some of the practical and ethical challenges. Emotional issues appear more complex. Further research into the challenges faced by all professionals in the withdrawal of NIV is necessary.
Adverse reactions to metal debris: histopathological features of periprosthetic soft tissue reactions seen in association with failed metal on metal hip arthroplasties
Authors: Natu Sonali , Sidaginamale Raghavendra Prasad , Gandhi Jamshid , Langton David J , Nargol Antoni V F 
Published: March 2012

AimTo describe the histopathology of localised adverse reactions to metal debris (ARMD) seen in association with failed metal on metal (MoM) hip arthroplasties. The nature of aseptic lymphocytic vasculitis associated lesion (ALVAL) is investigated.MethodsPeriprosthetic soft tissues biopsied at time of revision from failed MoM hip arthroplasties from January 2007 to March 2011 were analysed. The inflammatory cell response was categorised into perivascular lymphocytic cuffing (ALVAL), lymphoid aggregate formation with or without germinal centres, metallosis characterised by sheets of macrophages with intracytoplasmic metallic debris and well-defined granulomas.Results123 patient samples were analysed, 36 males (29.2%) and 87 females (70.8%). Three cases showing complete tissue necrosis were excluded. Patients were reviewed between 3.27 to 69.6 months postarthroplasty, with an average of 30.92 months. 103 cases (85.8%) showed ALVAL, 18 cases also showed well-defined granulomas. Of the 103 cases with ALVAL, 60 cases also showed a diffuse chronic lymphocytic synovitis, and 40 cases showed lymphoid aggregates with germinal centres. 17 cases (14.2%) showed pure metallosis. Small vessels showing ALVAL expressed peripheral node addressin.ConclusionsARMD is a spectrum of changes comprising of pure metallosis, ALVAL and granulomatous inflammation. ALVAL, a distinctive inflammatory response seen in ARMD, is a precursor of lymphoid neogenesis. Lymphoid neogenesis documented in a variety of chronic inflammatory conditions most probably contributes to tissue necrosis and prosthetic failure seen in MoM hip arthroplasties. The role of vascular changes in contributing to necrosis is unclear at this stage.