3,705 research outputs found

    'A light in a very dark place' : The role of a voluntary organisation providing support for those affected by encephalitis

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    Voluntary organisations are seen as contributing to the ‘democratisation’ of health and social care. Little, however, is written about their role and this paper, by focusing on the work of The Encephalitis Society, provides insights into the challenges facing voluntary organisations as they manage twin roles as service providers and advocates, of people with neurological disorders. Two studies are presented: a review conducted by the Society, focusing on patient’s experiences of neurological services; and an external evaluation of the Society’s current provision. The first, based on a postal survey of its members affected by encephalitis (n = 339), illustrates the Society’s advocacy role. The survey provided support for the Association of British Neurologists’ recommendation for nationally agreed standards of care. The second study, a postal survey of recent contacts (n = 76) and in-depth telephone interviews (n = 22), illustrates the Society’s value role as a service provider and supports its role in helping rehabilitate affected individuals and their families. These studies provided the Society with information for policy and service development. Importantly, providing the basis of informed action and partnership with stakeholders and informing the organisation’s sense of purpose, in the changing context of welfare provision in the UK

    Cultural basis of social ‘deficits’ in autism spectrum disorders

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    There is very little research that specifically looks at how autism spectrum disorders are perceived in various communities. This qualitative research was conducted with parents who had children on the autistic spectrum belonging to four different ethnic communities (White British, Somali, West African and South Asian- 63 in total) and living in the UK. The study found that the importance that the parents give to various social skills varied on the basis of their cultural background and the gender of the parent. This is an important aspect to consider while providing support and services to individuals on the autism spectrum and their family members if the services have to be appropriate for their needs. This consideration would also enable the individuals on the autism spectrum to develop appropriate social skills required within their cultural groups. This is a preliminary study and further research on the topic is required

    The use of biomedicine, complementary and alternative medicine, and ethnomedicine for the treatment of epilepsy among people of South Asian origin in the UK

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    Studies have shown that a significant proportion of people with epilepsy use complementary and alternative medicine (CAM). CAM use is known to vary between different ethnic groups and cultural contexts; however, little attention has been devoted to inter-ethnic differences within the UK population. We studied the use of biomedicine, complementary and alternative medicine, and ethnomedicine in a sample of people with epilepsy of South Asian origin living in the north of England. Interviews were conducted with 30 people of South Asian origin and 16 carers drawn from a sampling frame of patients over 18 years old with epilepsy, compiled from epilepsy registers and hospital databases. All interviews were tape-recorded, translated if required and transcribed. A framework approach was adopted to analyse the data. All those interviewed were taking conventional anti-epileptic drugs. Most had also sought help from traditional South Asian practitioners, but only two people had tried conventional CAM. Decisions to consult a traditional healer were taken by families rather than by individuals with epilepsy. Those who made the decision to consult a traditional healer were usually older family members and their motivations and perceptions of safety and efficacy often differed from those of the recipients of the treatment. No-one had discussed the use of traditional therapies with their doctor. The patterns observed in the UK mirrored those reported among people with epilepsy in India and Pakistan. The health care-seeking behaviour of study participants, although mainly confined within the ethnomedicine sector, shared much in common with that of people who use global CAM. The appeal of traditional therapies lay in their religious and moral legitimacy within the South Asian community, especially to the older generation who were disproportionately influential in the determination of treatment choices. As a second generation made up of people of Pakistani origin born in the UK reach the age when they are the influential decision makers in their families, resort to traditional therapies may decline. People had long experience of navigating plural systems of health care and avoided potential conflict by maintaining strict separation between different sectors. Health care practitioners need to approach these issues with sensitivity and to regard traditional healers as potential allies, rather than competitors or quacks

    Drought increases heat tolerance of leaf respiration in Eucalyptus globulus saplings grown under both ambient and elevated atmospheric [CO₂] and temperature

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    Climate change is resulting in increasing atmospheric [CO₂], rising growth temperature (T), and greater frequency/severity of drought, with each factor having the potential to alter the respiratory metabolism of leaves. Here, the effects of elevated atmospheric [CO₂], sustained warming, and drought on leaf dark respiration (R(dark)), and the short-term T response of R(dark) were examined in Eucalyptus globulus. Comparisons were made using seedlings grown under different [CO₂], T, and drought treatments. Using high resolution T-response curves of R(dark) measured over the 15-65 °C range, it was found that elevated [CO₂], elevated growth T, and drought had little effect on rates of R(dark) measured at T <35 °C and that there was no interactive effect of [CO₂], growth T, and drought on T response of R(dark). However, drought increased R(dark) at high leaf T typical of heatwave events (35-45 °C), and increased the measuring T at which maximal rates of R(dark) occurred (Tmax) by 8 °C (from 52 °C in well-watered plants to 60 °C in drought-treated plants). Leaf starch and soluble sugars decreased under drought and elevated growth T, respectively, but no effect was found under elevated [CO₂]. Elevated [CO₂] increased the Q₁₀ of R(dark) (i.e. proportional rise in R(dark) per 10 °C) over the 15-35 °C range, while drought increased Q₁₀ values between 35 °C and 45 °C. Collectively, the study highlights the dynamic nature of the T dependence of R dark in plants experiencing future climate change scenarios, particularly with respect to drought and elevated [CO₂].This work was funded by the Australian Research Council (ARC FT0991448, DP1093759, and CE140100008, to OKA; and DP0879531, to DTT). This project is supported by funding from the Australian Government Department of Agriculture, Fisheries and Forestry under its Forest Industries Climate Change Research Fund programme. Support for the renovation of the Hawkesbury Forest Experiment tree chambers to improve T and humidity control of the WTC was provided as part of an initiative of the Australian Government through the Education Investment Fund supporting research infrastructure

    Diagnostic pathways in multiple myeloma and their relationship to end organ damage: an analysis from the Tackling Early Morbidity and Mortality in Myeloma (TEAMM) trial.

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    Multiple myeloma is associated with significant early morbidity and mortality, with considerable end organ damage often present at diagnosis. The Tackling EArly Morbidity and Mortality in Multiple Myeloma (TEAMM) trial was used to evaluate routes to diagnosis in patients with myeloma and the relationship between diagnostic pathways, time to diagnosis and disease severity. A total of 915 participants were included in the study. Fifty-one per cent were diagnosed by direct referral from primary care to haematology; 29% were diagnosed via acute services and 20% were referred via other secondary care specialties. Patients diagnosed via other secondary care specialties had a longer diagnostic interval (median 120 days vs. 59 days) without an increase in features of severe disease, suggesting they had a relatively indolent disease. Marked intrahospital delay suggests possible scope for improvement. A quarter of those diagnosed through acute services reported >30 days from initial hospital consultation to haematology assessment. Participants diagnosed through acute services had poorer performance status (P < 0·0001) and higher burden of end organ damage (P < 0·0001) with no difference in the overall length of diagnostic pathway compared to those diagnosed by direct referral (median 59 days). This suggests that advanced disease in patients presenting through acute services predominantly reflects disease aggression

    A multi-centre qualitative study exploring the experiences of UK South Asian and White Diabetic Patients referred for renal care

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    Background An exploration of renal complications of diabetes from the patient perspective is important for developing quality care through the diabetic renal disease care pathway. Methods Newly referred South Asian and White diabetic renal patients over 16 years were recruited from nephrology outpatient clinics in three UK centres - Luton, West London and Leicester – and their experiences of the diabetes and renal care recorded. A semi-structured qualitative interview was conducted with 48 patients. Interview transcripts were analysed thematically and comparisons made between the White and South Asian groups. Results 23 South Asian patients and 25 White patients were interviewed. Patient experience of diabetes ranged from a few months to 35 years with a mean time since diagnosis of 12.1 years and 17.1 years for the South Asian and White patients respectively. Confusion emerged as a response to referral shared by both groups. This sense of confusion was associated with reported lack of information at the time of referral, but also before referral. Language barriers exacerbated confusion for South Asian patients. Conclusions The diabetic renal patients who have been referred for specialist renal care and found the referral process confusing have poor of awareness of kidney complications of diabetes. Healthcare providers should be more aware of the ongoing information needs of long term diabetics as well as the context of any information exchange including language barriers

    Sociodemographic factors and delays in the diagnosis of six cancers: analysis of data from the ‘National Survey of NHS Patients: Cancer'

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    This paper aims to explore the relationship between sociodemographic factors and the components of diagnostic delay (total, patient and primary care, referral, secondary care) for these six cancers (breast, colorectal, lung, ovarian, prostate, or non-Hodgkin's lymphoma). Secondary analysis of patient-reported data from the ‘National Survey of NHS patients: Cancer' was undertaken (65 192 patients). Data were analysed using univariate analysis and Generalised Linear Modelling. With regard to total delay, the findings from the GLM showed that for colorectal cancer, the significant factors were marital status and age, for lung and ovarian cancer none of the factors were significant, for prostate cancer the only significant factor was social class, for non-Hodgkin's lymphoma the only significant factor was age, and for breast cancer the significant factors were marital status and ethnic group. Where associations between any of the component delays were found, the direction of the association was always in the same direction (female subjects had longer delays than male subjects, younger people had longer delays than older people, single and separated/divorced people had longer delays than married people, lower social class groups had longer delays than higher social class groups, and Black and south Asian people had longer delays than white people). These findings should influence the design of interventions aimed at reducing diagnostic delays with the aim of improving morbidity, mortality, and psychological outcomes through earlier stage diagnosis

    The Kaon-Photoproduction Of Nucleons In The Quark Model

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    In this paper, we develop a general framework to study the meson-photoproductions of nucleons in the chiral quark model. The S and U channel resonance contributions are expressed in terms of the Chew-Goldberger-Low-Nambu (CGLN) amplitudes. The kaon-photoproduction processes, γpK+Λ\gamma p\to K^+ \Lambda, γpK+Σ0\gamma p\to K^+ \Sigma^0, and γpK0Σ+\gamma p\to K^0\Sigma^+, are calculated. The initial results show that the quark model provides a much improved description of the reaction mechanism for the kaon-photoproductions of the nucleon with less parameters than the traditional phenomenological approaches.Comment: 25 pages, 9 postscript figures can be obtained from the author

    The impact of surgically induced ischaemia on protein levels in patients undergoing rectal cancer surgery

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    The goal of targeted therapy has driven a search for markers of prognosis and response to adjuvant therapy. The surgical resection of a solid tumour induces tissue ischaemia and acidosis, both potent mediators of gene expression. This study investigated the impact of colorectal cancer (CRC) surgery on prognostic and predictive marker levels. Tumour expression of thymidylate synthase, thymidine phosphorylase, cyclin A, vascular endothelial growth factor (VEGF), carbonic anhydrase-9, hypoxia inducible factor-1α, and glucose transporter-1 (GLUT-1) proteins was determined before and after rectal cancer surgery. Spectral imaging of tissue sections stained by immunohistochemistry provided quantitative data. Surgery altered thymidylate synthase protein expression (P=0.02), and this correlated with the change in the proliferation marker cyclin A. The expression of hypoxia inducible factor-1α, VEGF, and GLUT-1 proteins was also different following surgery. Colorectal cancer surgery significantly impacts on intratumoral gene expression, suggesting archival specimens may not accurately reflect in situ marker levels. Although rectal cancer was the studied model, the results may be applicable to any solid tumour undergoing extirpation in which molecular markers have been proposed to guide patient therapy
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