• Unusual perceptions at the end of life: limitations to the diagnosis of hallucinations in palliative medicine

      Kellehear, Allan (2017)
      The diagnosis of hallucination for unusual perceptions such as deathbed visions, near-death experiences, or visions of the bereaved, is unhelpful in palliative medicine both academically and clinically. This paper reviews the broad prevalence data about unusual perceptions in the general population as background to identifying the more narrow epidemiological source from which the much smaller focus on hallucinations seem to emerge. Major debates and limitations of current hallucination research are reviewed to show that current academic and clinical certainties are largely confined to unusual perceptions that can be readily linked to psychopathology, quite specific organic disease states and psychoactive drug use. Current state-of-the-art in hallucination studies does not warrant broad or uncritical use of this type of diagnosis in end-of-life care. Conclusions from interdisciplinary (as opposed to single discipline) hallucination studies suggest that the way forward for clinical and research work in palliative medicine may lie in a more biographical and cultural approach to unusual perceptions at the end of life.
    • The use and costs of paid and unpaid care for people with dementia longitudinal findings from the IDEAL cohort programme

      Henderson, C.; Knapp, M.; Martyr, A.; Gamble, L.D.; Nelis, S.M.; Quinn, Catherine; Pentecost, C.; Collins, R.; Wu, Y.-T.; Jones, I.R.; et al. (2022-03-08)
      The drivers of costs of care for people with dementia are not well understood and little is known on the costs of care for those with rarer dementias. Objective: To characterise use and costs of paid and unpaid care over time in a cohort of people with dementia living in Britain. To explore the relationship between cohort members’ demographic and clinical characteristics and service costs. Methods: We calculated costs of health and social services, unpaid care, and out-of-pocket expenditure for people with mild-to-moderate dementia participating in three waves of the IDEAL cohort (2014-2018). Latent growth curve modelling investigated associations between participants’ baseline sociodemographic and diagnostic characteristics and mean weekly service costs. Results: Data were available on use of paid and unpaid care by 1537 community-dwelling participants with dementia at Wave 1, 1199 at Wave 2, and 910 at Wave 3. In models of paid service costs, being female was associated with lower baseline costs and living alone was associated with higher baseline costs. Dementia subtype and caregiver status were associated with variations in baseline costs and the rate of change in costs, which was additionally influenced by age. Conclusion: Lewy body and Parkinson's disease dementias were associated with higher service costs at the outset, and Lewy body and frontotemporal dementias with more steeply increasing costs overall, than Alzheimer’s disease. Planners of dementia services should consider the needs of people with these relatively rare dementia subtypes as they may require more resources than people with more prevalent subtypes.
    • Use and costs of services and unpaid care for people with mild-to-moderate dementia: Baseline results from the IDEAL cohort study

      Henderson, C.; Knapp, M.; Nelis, S.M.; Quinn, Catherine; Martyr, A.; Wu, Y.T.; Jones, I.R.; Victor, C.R.; Pickett, J.A.; Hindle, J.V.; et al. (2019)
      Introduction We examined 3-month service use and costs of care for people with mild-to-moderate dementia in Great Britain. Methods We analyzed Improving the experience of Dementia and Enhancing Active Life cohort study baseline data on paid care, out-of-pocket expenditure, and unpaid care from participants with dementia (N = 1547) and their carers (N = 1283). In regression analyses, we estimated per-group mean costs of diagnostic and sociodemographic subgroups. Results Use of services apart from primary and outpatient hospital care was low. Unpaid care accounted for three-quarters of total costs (mean, £4008 [standard error, £130] per participant). Most participants (87%) received unpaid care equating to 36 hours weekly. Estimated costs for people with Parkinson's dementia were £8609, £4359 for participants with mixed dementia, and £3484 for those with Alzheimer's disease. Total costs were lower for participants with dementia living alone than living with others (£2484 vs. £4360); costs were lower for female than for male participants (£3607 vs. £4272). Discussion Costs varied by dementia subtype, carer status, and living arrangement. Policy makers should recognize the high costs of unpaid care for people with dementia, who do not always get the support that they need or would like to receive.
    • The use of biomedicine, complementary and alternative medicine, and ethnomedicine for the treatment of epilepsy among people of South Asian origin in the UK

      Rhodes, P.J.; Small, Neil A.; Wright, J.; Ismail, Hanif (2008)
      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.
    • The use of history to identify anterior cruciate ligament injuries in the acute trauma setting: the 'LIMP index'

      Ayre, Colin A.; Hardy, Maryann L.; Scally, Andy J.; Radcliffe, G.; Venkatesh, R.; Smith, J.; Guy, S. (2017)
      Objective To identify the injury history features reported by patients with ACL injuries and determine whether history may be used to identify patients requiring follow-up appointments from acute trauma services. Multi-site cross-sectional service evaluation using a survey questionnaire design conducted in the UK. The four injury history features investigated (LIMP) were ‘Leg giving way at the time of injury’, ‘Inability to continue activity immediately following injury’, ‘Marked effusion’ and ‘Pop (heard or felt) at the time of injury’. 194 patients with ACL injury were identified of which 165 (85.5%) attended an acute trauma service. Data on delay was available for 163 (98.8%) of these patients of which 120 (73.6%) had a follow-up appointment arranged. Patients who had a follow-up appointment arranged waited significantly less time for a correct diagnosis (geometric mean 29 vs 198 days; p<0.001) and to see a specialist consultant (geometric mean 61 vs 328 days; p<0.001). Using a referral threshold of any 2 of the 4 LIMP injury history features investigated, 95.8% of patients would have had a follow-up appointment arranged. Findings support the value of questioning patients on specific injury history features in identifying patients who may have suffered ACL injury. Using a threshold of 2 or more of the 4 LIMP history features investigated would have reduced the percentage of patients inappropriately discharged by 22.2%. Evidence presented suggests that this would significantly reduce the time to diagnosis and specialist consultation minimising the chance of secondary complications.
    • Use of self-inflating bags for neonatal resuscitation.

      Oddie, S.J.; Wylie, J.; Scally, Andy J. (2005)
      Background: Lung inflation is the most important, and most difficult step in newborn resuscitation. A wide variety of devices are used to achieve lung inflation, but there are relatively few data to guide clinicians in their choice of device. Methods: We tested the ability of instructors and trained candidates on a newborn life support course to deliver initial inflation breaths to a test lung, using a pressure limited blow-off valve, a 240-ml self-inflating bag and a 500-ml self-inflating bag in sequence. Results: Use of a 240-ml self-inflating bag was associated with shorter initial inflations of 1.8 s mean (95% CI 1.60¿1.99 s), compared with 2.42 s (2.24¿2.61 s), 2.40 s (2.08¿2.71 s) for 500-ml self-inflating bags and ¿Tom Thumb¿ T piece, respectively. Delivery of breaths within a target pressure range of 30 ± 5 cm H2O was significantly better using a T piece than either self-inflating bag (proportion within target range 0.05 (95% CI 0¿0.11), 0.17 (95% CI 0.12¿0.23), 0.89 (95% CI 0.83¿0.94) for 240-ml and 500-ml self-inflating bags and ¿Tom Thumb¿ T piece, respectively. Excessive pressure delivery with both sizes of self-inflating bag was frequent. Conclusions: These data do not support use of 240-ml or 500-ml self-inflating bags for resuscitation of newborn term infants. A variable pressure T piece blow-off system may be the easiest device to use for newborn resuscitation and the most reliable at delivering desired pressures for set times.
    • Use of single-vision distance spectacles improves landing control during step descent in well-adapted multifocal lens-wearers

      Timmis, Matthew A.; Johnson, Louise; Elliott, David B.; Buckley, John G. (2010)
      PURPOSE: Epidemiologic research has shown that multifocal spectacle wearers (bifocal and progressive addition lenses [PALs]) are more than twice as likely to fall than are nonmultifocal spectacle wearers, with this risk further increasing when negotiating stairs. The present study investigated whether step and stair descent safety is improved by using single-vision distance lenses. METHODS: From a stationary standing position on top of a block, 20 long-term multifocal wearers stepped down (from different block heights) onto a lower level wearing bifocal, progressive addition, or single-vision distance lenses. RESULTS: Use of single-vision distance spectacles led to an increased single-limb support time, a reduced ankle and knee angle and vertical center-of-mass velocity at contact with the lower level, and a reduced ankle angular velocity and vertical center-of-mass velocity during initial landing (P < 0.03). These findings indicate that landing occurred in a more controlled manner when the subjects wore single-vision distance spectacles, rather than tending to "drop" onto the lower level as occurred when wearing bifocals or PALs. CONCLUSIONS: Use of single-vision distance spectacles led to improvements in landing control, consistent with individuals' being more certain regarding the precise height of the lower floor level. This enhanced control was attributed to having a view of the foot, step edge, and immediate floor area that was not blurred, magnified, or doubled and that did not suffer from image jump or peripheral distortions. These findings provide further evidence that use of single-vision distance lenses in everyday locomotion may be advantageous for elderly multifocal wearers who have a high risk of falling.
    • User and community participation at the end of life

      Small, Neil A.; Sargeant, Anita R. (2011)
    • User involvement in palliative care: Motivational factors for service users and professionals

      Sargeant, A.; Payne, S.; Gott, M.; Small, Neil A.; Oliviere, D. (2007-10)
      Few studies shed light on what motivates or discourages patients, carers and professionals for participating in user involvement activities. Aim: To identify motivational factors that affect the engagement of service users and professionals with user-involvement activities. Methods: As part of a larger scoping study of user involvement in palliative care, 51 semistructured interviews were conducted with service users, palliative care professionals and experts to explore experiences of user-involvement initiatives. Four user-involvement programmes were also observed. Data were analysed using a thematic analysis technique. A subsequent consultation meeting with 48 service users and professionals discussed the preliminary findings. Results: User involvement has been predominantly developed through a 'top-down' professional agenda. A few highly motivated individuals, both service users and palliative care professionals, are extremely influential in starting and maintaining user involvement. Reported benefits include personal satisfaction and status but barriers are tokenism and time pressures.
    • Using a multi-stakeholder experience-based design process to co-develop the Creating Active Schools Framework

      Daly-Smith, Andrew; Quarmby, T.; Archbold, V.S.J.; Corrigan, N.; Wilson, D.; Resaland, G.K.; Bartholomew, J.B.; Singh, A.; Tjomsland, H.E.; Sherar, L.B.; et al. (2020-02)
      UK and global policies recommend whole-school approaches to improve childrens' inadequate physical activity (PA) levels. Yet, recent meta-analyses establish current interventions as ineffective due to suboptimal implementation rates and poor sustainability. To create effective interventions, which recognise schools as complex adaptive sub-systems, multi-stakeholder input is necessary. Further, to ensure 'systems' change, a framework is required that identifies all components of a whole-school PA approach. The study's aim was to co-develop a whole-school PA framework using the double diamond design approach (DDDA). Fifty stakeholders engaged in a six-phase DDDA workshop undertaking tasks within same stakeholder (n = 9; UK researchers, public health specialists, active schools coordinators, headteachers, teachers, active partner schools specialists, national organisations, Sport England local delivery pilot representatives and international researchers) and mixed (n = 6) stakeholder groupings. Six draft frameworks were created before stakeholders voted for one 'initial' framework. Next, stakeholders reviewed the 'initial' framework, proposing modifications. Following the workshop, stakeholders voted on eight modifications using an online questionnaire. Following voting, the Creating Active Schools Framework (CAS) was designed. At the centre, ethos and practice drive school policy and vision, creating the physical and social environments in which five key stakeholder groups operate to deliver PA through seven opportunities both within and beyond school. At the top of the model, initial and in-service teacher training foster teachers' capability, opportunity and motivation (COM-B) to deliver whole-school PA. National policy and organisations drive top-down initiatives that support or hinder whole-school PA. To the authors' knowledge, this is the first time practitioners, policymakers and researchers have co-designed a whole-school PA framework from initial conception. The novelty of CAS resides in identifying the multitude of interconnecting components of a whole-school adaptive sub-system; exposing the complexity required to create systems change. The framework can be used to shape future policy, research and practice to embed sustainable PA interventions within schools. To enact such change, CAS presents a potential paradigm shift, providing a map and method to guide future co-production by multiple experts of PA initiatives 'with' schools, while abandoning outdated traditional approaches of implementing interventions 'on' schools.
    • Using a prediction of death in the next 12 months as a prompt for referral to palliative care acts to the detriment of patients with heart failure and chronic obstructive pulmonary disease

      Small, Neil A.; Gardiner, C.; Barnes, S.; Gott, M.; Payne, S.; Seamark, D.; Halpin, D.
      Dear Editor In undertaking studies of palliative care in heart failure and chronic obstructive pulmonary disease (COPD) in the UK, we identified procedural, conceptual and ethical challenges that may arise from one feature of The End of Life Care Strategy for England.1 The strategy presents the question, ‘Would I be surprised if the person in front of me was to die in the next six months or one year?’ as a prompt to initiate discussion of endof-life care needs and preferences (paragraph 3.23). We believe this question is inappropriate in heart failure and COPD and its use will inhibit the initiation of a palliative care approach with these patients.
    • Using authenticity to achieve competitive advantage in medical tourism in the English-speaking Caribbean

      Chambers, D.; McIntosh, Bryan (2008)
      Medical tourism is a relatively recent global economic and political phenomenon which has assumed increasing importance for developing countries, particularly in Asia. It has been slower to develop within the context of the tourism industry in English-speaking Caribbean countries but there is evidence that the tourism policy makers in the region perceive medical tourism as a potentially lucrative niche market. However, while the potential of medical tourism has seemingly been embraced by the region's political directorate, there has been limited discussion of the extent to which this market niche can realistically provide competitive advantage for the region. The argument of this conceptual paper is that the English-speaking Caribbean cannot hope to compete successfully in the global medical tourism market with many developing world destinations in Asia, or even with other Caribbean countries such as Cuba, on factors such as low cost, staff expertise, medical technological capability, investment in healthcare facilities or even in terms of the natural resources of sun, sea and sand. Rather, in order to achieve competitive advantage the countries of the region should, on the one hand, identify and develop their unique resources and competences as they relate to medical tourism, while, on the other hand, they should exploit the demand of the postmodern tourist for authentic experiences. Both these supply and demand side issues, it is argued, can be addressed through the development of a medical tourism product that utilises the region's indigenous herbal remedies. [PUBLICATION ABSTRACT]; Medical tourism is a relatively recent global economic and political phenomenon which has assumed increasing importance for developing countries, particularly in Asia. It has been slower to develop within the context of the tourism industry in English-speaking Caribbean countries but there is evidence that the tourism policy makers in the region perceive medical tourism as a potentially lucrative niche market. However, while the potential of medical tourism has seemingly been embraced by the region's political directorate, there has been limited discussion of the extent to which this market niche can realistically provide competitive advantage for the region. The argument of this conceptual paper is that the English-speaking Caribbean cannot hope to compete successfully in the global medical tourism market with many developing world destinations in Asia, or even with other Caribbean countries such as Cuba, on factors such as low cost, staff expertise, medical technological capability, investment in healthcare facilities or even in terms of the natural resources of sun, sea and sand. Rather, in order to achieve competitive advantage the countries of the region should, on the one hand, identify and develop their unique resources and competences as they relate to medical tourism, while, on the other hand, they should exploit the demand of the postmodern tourist for authentic experiences. Both these supply and demand side issues, it is argued, can be addressed through the development of a medical tourism product that utilises the region's indigenous herbal remedies. Reprinted by permission of Carfax Publishing, Taylor & Francis Ltd.
    • Using Authenticity to Achieve Competitive Advantage in Medical Tourism in the English-speaking Caribbean

      Chambers, D.; McIntosh, Bryan (2008)
      Medical tourism is a relatively recent global economic and political phenomenon which has assumed increasing importance for developing countries, particularly in Asia. It has been slower to develop within the context of the tourism industry in English-speaking Caribbean countries but there is evidence that the tourism policy makers in the region perceive medical tourism as a potentially lucrative niche market. However, while the potential of medical tourism has seemingly been embraced by the region's political directorate, there has been limited discussion of the extent to which this market niche can realistically provide competitive advantage for the region. The argument of this conceptual paper is that the English-speaking Caribbean cannot hope to compete successfully in the global medical tourism market with many developing world destinations in Asia, or even with other Caribbean countries such as Cuba, on factors such as low cost, staff expertise, medical technological capability, investment in healthcare facilities or even in terms of the natural resources of sun, sea and sand. Rather, in order to achieve competitive advantage the countries of the region should, on the one hand, identify and develop their unique resources and competences as they relate to medical tourism, while, on the other hand, they should exploit the demand of the postmodern tourist for authentic experiences. Both these supply and demand side issues, it is argued, can be addressed through the development of a medical tourism product that utilises the region's indigenous herbal remedies.
    • Using avatars in weight management settings: a systematic review

      Horne, M.; Hill, A.; Murells, T.; Ugail, Hassan; Irving; Chinnadorai, R.; Hardy, Maryann L. (2020-03)
      Background: Obesity interventions rely predominantly on managing dietary intake and/or increasing physical activity but sustained adherence to behavioural regimens is often poor. Avatar technology is well established within the computer gaming industry and evidence suggests that virtual representations of self may impact real-world behaviour, acting as a catalyst for sustained weight loss behaviour modification. However, the effectiveness of avatar technology in promoting weight loss is unclear. Aims: We aimed to assess the quantity and quality of empirical support for the use of avatar technologies in adult weight loss interventions. Method: A systematic review of empirical studies was undertaken. The key objectives were to determine if: (i) the inclusion of avatar technology leads to greater weight loss achievement compared to routine intervention; and (ii) whether weight loss achievement is improved by avatar personalisation (avatar visually reflects self). Results: We identified 6 papers that reported weight loss data. Avatar-based interventions for weight loss management were found to be effective in the short (4–6 weeks) and medium (3–6 months) term and improved weight loss maintenance in the long term (12 months). Only 2 papers included avatar personalisation, but results suggested there may be some added motivational benefit. Conclusions: The current evidence supports that avatars may positively impact weight loss achievement and improve motivation. However, with only 6 papers identified the evidence base is limited and therefore findings need to be interpreted with caution.
    • Using birth cohort data to assess the impact of the UK 2008-2010 economic recession on smoking during pregnancy

      Uphoff, E.P.; Small, Neil A.; Pickett, K.E. (2019-08)
      Introduction Despite the well-known link between stress and smoking, evidence for associations between economic recession, financial stress and smoking is contradictory. In this study we assess whether women were more likely to continue smoking during pregnancy if they were exposed to the UK 2008-2010 economic recession during pregnancy than those who were unexposed, and whether this relationship is mediated by financial stress. Methods We used cross-sectional data on 2775 pregnant women who were regular smokers before pregnancy and who were enrolled in the UK Born in Bradford cohort study between March 2007 and December 2010. The cut-off date for exposure to recession was set at August 1, 2008, based on local and national economic data. Multivariable logistic regression analysis included potential confounders: maternal age, parity, cohabitation, ethnicity and maternal age. The mediating role of financial stress was analysed using ‘worse off financially’ and a ‘difficult financial situation’ as indicators of financial stress in Sobel-Goodman mediation tests with bootstrap resampling. Results After taking into account potential confounders, exposure to recession was associated with continued smoking during pregnancy (OR 1.19, 95% CI 1.01; 1.41, p=0.03). A worse financial situation and difficult financial situation were identified as mediators, explaining 8.4% and 17.6%, respectively, of the relationship between exposure to recession and smoking during pregnancy. Conclusions Smoking during pregnancy is associated with exposure to the UK 2008-2010 economic recession during pregnancy, and this relationship is partly mediated by financial stress.
    • Using ethnography (or qualitative methods) to investigate medication errors: a critique of a published study.

      Armitage, Gerry R.; Hodgson, Ian J. (2009-11-18)
      The effects of drug errors and any consequent adverse events frequently impact on patients, their relatives and professional carers. Furthermore, the financial cost to the National Health Service is considerable (DoH, 2000; DoH, 2001; DoH, 2004). In a study of two London teaching hospitals, Vincent et al. (2001) found that 10% of patients are exposed to an adverse event, which adds a mean 8.5 days to their hospital stay. Drug errors are recurrently reported to account for between 10 and 20% of all adverse events (DoH, 2004). In response to Department of Health policy, NHS trusts are changing their approach to the management of error to encourage more reporting. The emphasis is on openness and support, and individual and organisational learning rather than blame. Research designed to increase a knowledge of the aetiology and context of drug errors should be carefully constructed and include qualitative methods which, if implemented according to established convention, can reflect the approaches described above. This paper will critique a recently published study that focused on nursing practice and was, in our view, inappropriately described as ethnographic. The study undoubtedly adds to the body of existing knowledge about drug errors and, crucially, if the study contributes to improved patient safety, it must, fundamentally, be valued. Nevertheless, some qualitative research conventions were broken and, as such, it is suggested, some opportunities for a broader understanding and for learning may have been lost. The critique will lead to a range of recommendations about future qualitative studies in this research domain which, it is argued, could produce a fuller picture of the context, culture and, perhaps, even the cause of error.
    • Using latent class analysis to develop a model of the relationship between socioeconomic position and ethnicity: cross-sectional analyses from a multi-ethnic birth cohort study.

      Fairley, L.; Cabieses, B.; Small, Neil A.; Petherick, E.S.; Lawlor, D.A.; Pickett, K.E.; Wright, J. (2014-08-12)
      Background Almost all studies in health research control or investigate socioeconomic position (SEP) as exposure or confounder. Different measures of SEP capture different aspects of the underlying construct, so efficient methodologies to combine them are needed. SEP and ethnicity are strongly associated, however not all measures of SEP may be appropriate for all ethnic groups. Methods We used latent class analysis (LCA) to define subgroups of women with similar SEP profiles using 19 measures of SEP. Data from 11,326 women were used, from eight different ethnic groups but with the majority from White British (40%) or Pakistani (45%) backgrounds, who were recruited during pregnancy to the Born in Bradford birth cohort study. Results Five distinct SEP subclasses were identified in the LCA: (i) "Least socioeconomically deprived and most educated" (20%); (ii) "Employed and not materially deprived" (19%); (iii) "Employed and no access to money" (16%); (iv) "Benefits and not materially deprived" (29%) and (v) "Most economically deprived" (16%). Based on the magnitude of the point estimates, the strongest associations were that compared to White British women, Pakistani and Bangladeshi women were more likely to belong to groups: (iv) "benefits and not materially deprived" (relative risk ratio (95% CI): 5.24 (4.44, 6.19) and 3.44 (2.37, 5.00), respectively) or (v) most deprived group (2.36 (1.96, 2.84) and 3.35 (2.21, 5.06) respectively) compared to the least deprived class. White Other women were more than twice as likely to be in the (iv) "benefits and not materially deprived group" compared to White British women and all ethnic groups, other than the Mixed group, were less likely to be in the (iii) "employed and not materially deprived" group than White British women. Conclusions LCA allows different aspects of an individual’s SEP to be considered in one multidimensional indicator, which can then be integrated in epidemiological analyses. Ethnicity is strongly associated with these identified subgroups. Findings from this study suggest a careful use of SEP measures in health research, especially when looking at different ethnic groups. Further replication of these findings is needed in other populations.