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    AuthorBarnes, S. (3)Gott, M. (3)Mohammed, Mohammed A. (3)Payne, S. (3)Seamark, D. (3)Small, Neil A. (3)Gardiner, C. (2)Halpin, D. (2)Hare, D.J. (2)McIntosh, C.J. (2)View MoreSubject; Female (15); Humans (15); Male (15)
    ; Middle aged (15)
    Aged (7); Aged (6)Adult (5); Great Britain (4); Adult (3); Dementia (3)View MoreDate Issued2015 (3)2013 (6)2012 (2)2011 (1)2009 (1)2008 (2)

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    'She's usually quicker than the calculator': financial management and decision-making in couples living with dementia

    Boyle, Geraldine (2013)
    This article explores how married couples managed their finances and made financial decisions when one spouse had dementia, drawing comparisons with the approaches used prior to the illness. More specifically, the article examines the role of social factors in influencing the involvement of people with dementia in financial management and decision-making, particularly whether a gender dynamic adopted earlier in a marriage similarly influenced a gendered approach following dementia. The research formed part of a larger study of everyday decision-making by couples living with dementia which explored the role of non-cognitive factors in influencing whether people with dementia were involved in decision-making processes. Twenty-one married couples living at home took part; the recently-diagnosed were excluded. Qualitative methods -including participant observation and interviews - were used to examine the couples' fiscal management and decision-making-processes, the perceptions of people with dementia and their spouses about their current financial abilities and whether any support provided by spouse-carers influenced their partners' financial capacity. The fieldwork was undertaken in the North of England between June 2010 and May 2011. Thematic analysis of the data showed that social factors influenced the perceived capacity of people with dementia and the financial practices adopted by the couples. In particular, gender influenced whether people with dementia were involved in financial decisions. The research demonstrated that non-cognitive factors need to be taken into account when assessing and facilitating the capacity of people with dementia. In addition, as people with dementia were somewhat marginalised in decisions about designating financial authority (Lasting Power of Attorney), spouse-carers may need guidance on how to undertake advance care planning and how to support their relatives with dementia in major decision-making, particularly when there are communication difficulties.
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    Excellent cross-cultural validity, intra-test reliability and construct validity of the Dutch Rivermead Mobility Index in patients after stroke undergoing rehabilitation

    Roorda, L.D.; Green, J.R.; De Kluis, K.R.; Molenaar, I.W.; Bagley, Pamela J.; Smith, J.; Geurts, A.C. (2008)
    OBJECTIVE: To investigate the cross-cultural validity of international Dutch-English comparisons when using the Dutch Rivermead Mobility Index (RMI), and the intra-test reliability and construct validity of the Dutch RMI. METHODS: Cross-cultural validity was studied in a combined data-set of Dutch and English patients undergoing rehabilitation after stroke, who were assessed with the Dutch version of the RMI and the original English RMI, respectively. Mokken scale analysis was used to investigate unidimensionality, monotone homogeneity model fit, and differential item functioning between the Dutch and the English RMI. Intra-test reliability and construct validity were studied in the Dutch patients by calculating the reliability coefficient and correlating the Dutch RMI and the Dutch Barthel Index. RESULTS: The RMI was completed for Dutch (n = 200) and English (n = 420) patients after stroke. The unidimensionality and monotone homogeneity model fit of the RMI were excellent: combined Dutch-English data-set (coefficient H = 0.91); Dutch data-set (coefficient H = 0.93); English data-set (coefficient H = 0.89). No differential item functioning was found between the Dutch and the English RMI. The intra-test reliability of the Dutch RMI was excellent (coefficient rho = 0.97). In a sub-sample of patients (n = 91), the Dutch RMI correlated strongly with the Dutch Barthel Index (Spearman's correlation coefficient rho = 0.84). CONCLUSION: The Dutch RMI allows valid international Dutch-English comparisons, and has excellent intra-test reliability and construct validity.
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    Older people's views of a good death in heart failure: implications for palliative care provision

    Gott, M.; Small, Neil A.; Barnes, S.; Payne, S.; Seamark, D. (2008)
    Palliative care in the UK has been developed to meet the needs of predominantly middle aged and younger old people with cancer. Few data are available regarding the extent to which services respond to the specific needs of an older group of people with other illnesses. This paper draws on in-depth interviews conducted with 40 people (median age 77) with advanced heart failure and poor prognosis to explore the extent to which older people's views and concerns about dying are consistent with the prevalent model of the 'good death' underpinning palliative care delivery. That prevalent model is identified as the "revivalist" good death. Our findings indicate that older people's views of a 'good death' often conflict with the values upon which palliative care is predicated. For example, in line with previous research, many participants did not want an open awareness of death preceded by acknowledgement of the potential imminence of dying. Similarly, concepts of autonomy and individuality appeared alien to most. Indeed, whilst there was evidence that palliative care could help improve the end of life experiences of older people, for example in initiating discussions around death and dying, the translation of other aspects of specialist palliative care philosophy appear more problematic. Ultimately, the study identified that improving the end of life experiences of older people must involve addressing the problematised nature of ageing and old age within contemporary society, whilst recognising the cohort and cultural effects that influence attitudes to death and dying.
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    Validity of dementia care mapping on a neuro-rehabilitation ward: Q-methodology with staff and patients

    Westbrook, J.L.; McIntosh, C.J.; Sheldrick, R.; Surr, Claire A.; Hare, D.J. (2013)
    BACKGROUND: Measuring the quality of care for people using neuro-rehabilitation services is a complex area requiring reliable methods that account for variable communication abilities/cognitive functioning. Dementia Care Mapping (DCM) is an observational method widely used in dementia care to improve person-centred care, which may be usefully applied to neuro-rehabilitation settings. Evaluation is vital to determine the tool's acceptability in this setting. PURPOSE: To explore the views of staff/patients regarding whether the use of DCM is acceptable in a neuro-rehabilitation setting. METHOD: DCM was conducted on an acute neuro-rehabilitation ward. Q-methodology, a technique for extracting subjective opinions, was used with 23 staff and 10 patients on the ward to evaluate the acceptability of DCM. RESULTS: Factor analysis was performed separately for staff and patient Q-sorts. Each found a "consensus" factor where all participants indicated positive acceptability for the use of DCM. Further exploratory factors indicated that some staff/patients had additional views/concerns that were not captured by the first consensus factor. CONCLUSIONS: The results from this preliminary study are promising and indicate that DCM is potentially an acceptable tool to use in acute neuro-rehabilitation. Further research is needed to explore the acceptability of this tool more widely across neuro-rehabilitation settings. IMPLICATIONS FOR REHABILITATION: Person-centred care is widely acknowledged as being important in all care settings, including neurorehabilitation. Dementia Care Mapping was deemed to be an acceptable approach for improving the quality of person-centred care on the basis of the views of staff and patients in a neurorehabilitation ward. Dementia Care Mapping, with adaptations for neurorehabilitation settings, successfully provides an acceptable framework for measuring and improving the quality of person-centred care in this setting.
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    The personal experience of partners of individuals with motor neuron disease

    Oyebode, Jan R.; Smith, H.J.; Morrison, K. (2013)
    Most research on partners' experiences of living with a person with MND is questionnaire-based with no qualitative study focusing on the period between diagnosis and end-of-life care. This study aimed to provide an in-depth qualitative exploration of the experience of living with, and caring for, a partner with MND. Semi-structured interviews were conducted with eight individuals, and transcripts analysed from an interpretative phenomenological perspective. Two main themes were derived. 'Impact on life' included having concern for partner's safety, having social restrictions, being continually tired, struggling with anger and frustration, loss of intimacy and uncertainty around the future; while 'Adjusting to the situation' included trying to be strong, retaining a sense of normality, appreciation of specialist services, adopting a problem-solving approach, living day to day and ability to remain positive. In conclusion, experiences of stress and loss are illustrated in this sample of partners of those with MND, and it is suggested both these aspects should be integrated into understanding of carers' experiences. Carers appear to inhibit their grief in order to appear strong. Greater understanding of the consequences of this would help in providing appropriate emotional support.
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    The feasibility of Dementia Care Mapping (DCM) on a neurorehabilitation ward

    McIntosh, C.J.; Westbrook, J.L.; Sheldrick, R.; Surr, Claire A.; Hare, D.J. (2012)
    Person-centred care (PCC) is recommended when working with patients with neurological difficulties. Despite this, to date there has been no appropriate methodology for assessing or developing PCC in neurorehabilitation settings. Dementia Care Mapping (DCM) is a well-established tool for assessing and developing PCC in dementia settings and the current study investigated the feasibility of applying DCM on an acute neurorehabilitation ward. DCM procedure and coding required minor adaptations for use in this setting and further recommended adaptations were subsequently identified. It was found that the DCM coding system was generally suitable and could identify strengths, weaknesses and areas for development in ward care. Q-methodology identified that staff views endorsed the feasibility of using DCM in neurorehabilitation, with staff reporting that they found DCM useful and relevant to their work. DCM could be further developed for this setting by amendments to the behaviour coding system, concept and coding of person-centred care, and a population-specific manual. DCM is a promising methodology to develop and promote PCC in neurorehabilitation.
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    Metamemory and prospective memory in Parkinson's disease

    Smith, Sarah J.; Souchay, C.; Moulin, C.J.A. (2011)
    OBJECTIVE: Metamemory is integral for strategizing about memory intentions. This study investigated the prospective memory (PM) deficit in Parkinson's disease (PD) from a metamemory viewpoint, with the aim of examining whether metamemory deficits might contribute to PM deficits in PD. METHOD: Sixteen patients with PD and 16 healthy older adult controls completed a time-based PM task (initiating a key press at two specified times during an ongoing task), and an event-based PM task (initiating a key press in response to animal words during an ongoing task). To measure metamemory participants were asked to predict and postdict their memory performance before and after completing the tasks, as well as complete a self-report questionnaire regarding their everyday memory function. RESULTS: The PD group had no impairment, relative to controls, on the event-based task, but had prospective (initiating the key press) and retrospective (recalling the instructions) impairments on the time-based task. The PD group also had metamemory impairments on the time-based task; they were inaccurate at predicting their performance before doing the task but, became accurate when making postdictions. This suggests impaired metamemory knowledge but preserved metamemory monitoring. There were no group differences regarding PD patients' self-reported PM performance on the questionnaire. CONCLUSIONS: These results reinforce previous findings that PM impairments in PD are dependent on task type. Several accounts of PM failures in time-based tasks are presented, in particular, ways in which mnemonic and metacognitive deficits may contribute to the difficulties observed on the time-based task.
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    You get old, you get breathless, and you die: chronic obstructive pulmonary disease in Barnsley, UK

    Small, Neil A.; Gardiner, C.; Barnes, S.; Gott, M.; Halpin, D.; Payne, S.; Seamark, D. (2012)
    We report patients, family members and health professionals' experiences of Chronic Obstructive Pulmonary Disease (COPD) in Barnsley, northern England. A widespread belief that having "bad lungs" is part of normal ageing shapes everyday experience in this former mining town. People with COPD, and their families, link its cause to the areas industrial past and are sceptical of a medical orthodoxy that attributes cause to smoking. They doubt doctors' objectivity. Encouraging uptake of care, promoting smoking cessation, and developing care planning would be enhanced by engaging with the significance of place in the social narrative of health evident in this town.
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    Living with advanced chronic obstructive pulmonary disease: patients concerns regarding death and dying

    Gardiner, C.; Gott, M.; Small, Neil A.; Payne, S.; Seamark, D.; Barnes, S.; Halpin, D.; Ruse, C. (2009)
    Prognosis in COPD is poor and many patients perceive shortcomings in the education they receive about aspects of their condition. This study explores the experiences of patients with COPD, particularly fears surrounding death and dying. Semi-structured interviews were conducted with 21 patients with moderate or severe COPD. Findings revealed that patient understanding of COPD was poor, most patients were unaware of the progressive nature of the condition, and few were aware they could die of COPD. Despite this, patients often expressed concerns that their condition might deteriorate. Patients had particular concerns regarding the manner of their death; the overriding fear was dying of breathlessness or suffocation. None of the patients' had discussed these fears with a health care professional. Improved patient education is needed in order to improve patients understanding of their condition and prognosis. Open communication regarding death, as advocated in a palliative care approach, is also appropriate to alleviate patients fears and to allow them to make decisions regarding the management of their care at the end of life.
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    Development and validation of a decision tree early warning score based on routine laboratory test results for the discrimination of hospital mortality in emergency medical admissions

    Jarvis, S.W.; Kovacs, C.; Badriyah, T.; Briggs, J.; Mohammed, Mohammed A.; Meredith, P.; Schmidt, P.E.; Featherstone, P.I.; Prytherch, D.R.; Smith, G.B. (2013-11)
    To build an early warning score (EWS) based exclusively on routinely undertaken laboratory tests that might provide early discrimination of in-hospital death and could be easily implemented on paper. Using a database of combined haematology and biochemistry results for 86,472 discharged adult patients for whom the admission specialty was Medicine, we used decision tree (DT) analysis to generate a laboratory decision tree early warning score (LDT-EWS) for each gender. LDT-EWS was developed for a single set (n=3496) (Q1) and validated in 22 other discrete sets each of three months long (Q2, Q3...Q23) (total n=82,976; range of n=3428 to 4093) by testing its ability to discriminate in-hospital death using the area under the receiver-operating characteristic (AUROC) curve. The data generated slightly different models for male and female patients. The ranges of AUROC values (95% CI) for LDT-EWS with in-hospital death as the outcome for the validation sets Q2-Q23 were: 0.755 (0.727-0.783) (Q16) to 0.801 (0.776-0.826) [all patients combined, n=82,976]; 0.744 (0.704-0.784, Q16) to 0.824 (0.792-0.856, Q2) [39,591 males]; and 0.742 (0.707-0.777, Q10) to 0.826 (0.796-0.856, Q12) [43,385 females]. CONCLUSIONS: This study provides evidence that the results of commonly measured laboratory tests collected soon after hospital admission can be represented in a simple, paper-based EWS (LDT-EWS) to discriminate in-hospital mortality. We hypothesise that, with appropriate modification, it might be possible to extend the use of LDT-EWS throughout the patient's hospital stay.
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