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    AuthorSmall, Neil A. (9)Barnes, S. (5)Gott, M. (5)Mohammed, Mohammed A. (5)Payne, S. (5)Seamark, D. (5)Gardiner, C. (4)Halpin, D. (4)Kellehear, Allan (3)Oyebode, Jan R. (3)View MoreSubject
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    Confronting mortality: faith and meaning across cultures

    Paulson, S.; Kellehear, Allan; Kripal, J.J.; Leary, L. (2014)
    Despite advances in technology and medicine, death itself remains an immutable certainty. Indeed, the acceptance and understanding of our mortality are among the enduring metaphysical challenges that have confronted human beings from the beginning of time. How have we sought to cope with the inevitability of our mortality? How do various cultural and social representations of mortality shape and influence the way in which we understand and approach death? To what extent do personal beliefs and convictions about the meaning of life or the notion of an afterlife affect how we perceive and experience the process of death and dying? Steve Paulson, executive producer and host of To the Best of Our Knowledge, moderated a discussion on death, dying, and what lies beyond that included psychologist Lani Leary, professor of philosophy and religion Jeffrey J. Kripal, and sociologist Allan Kellehear. The following is an edited transcript of the discussion that occurred February 5, 7:00-8:30 pm, at the New York Academy of Sciences in New York City.
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    A call to action: an IWG charter for a public health approach to dying, death, and loss

    Becker, C.; Clark, E.; DeSpelder, L.A.; Dawes, J.; Ellershaw, J.; Howarth, G.; Kellehear, Allan; Kumar, S.; Monroe, B.; O'Connor, P.; Oliviere, D.; Relf, M.; Rosenberg, J.; Rowling, L.; Silverman, P.; Wilkie, D.J. (2014)
    The current systems of care for dying persons, the people caring for them, and the bereaved operate in ways that frequently lack sufficient sensitivity to their needs. We describe a new model for dying, death, and loss that adopts a public health approach. Specifically, we describe a deliberative process that resulted in a charter for a public health approach to dying, death, and loss. Modeled after the World Health Organization's 1986 Ottawa Charter, our charter includes a call to action. It has the potential to bring about significant change on local, societal, and global levels as exemplified by four projects from three countries. Public health and end-of-life services and organizations need to form partnerships with the community to develop a public health approach to dying, death, and loss. Learning from each other, they will affirm and enhance community beliefs and practices that make death part of life.
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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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    Binocular summation and other forms of non-dominant eye contribution in individuals with strabismic amblyopia during habitual viewing

    Barrett, Brendan T.; Panesar, Gurvinder K.; Scally, Andy J.; Pacey, Ian E. (2013-10-29)
    Adults with amblyopia ('lazy eye'), long-standing strabismus (ocular misalignment) or both typically do not experience visual symptoms because the signal from weaker eye is given less weight than the signal from its fellow. Here we examine the contribution of the weaker eye of individuals with strabismus and amblyopia with both eyes open and with the deviating eye in its anomalous motor position. The task consisted of a blue-on-yellow detection task along a horizontal line across the central 50 degrees of the visual field. We compare the results obtained in ten individuals with strabismic amblyopia with ten visual normals. At each field location in each participant, we examined how the sensitivity exhibited under binocular conditions compared with sensitivity from four predictions, (i) a model of binocular summation, (ii) the average of the monocular sensitivities, (iii) dominant-eye sensitivity or (iv) non-dominant-eye sensitivity. The proportion of field locations for which the binocular summation model provided the best description of binocular sensitivity was similar in normals (50.6%) and amblyopes (48.2%). Average monocular sensitivity matched binocular sensitivity in 14.1% of amblyopes' field locations compared to 8.8% of normals'. Dominant-eye sensitivity explained sensitivity at 27.1% of field locations in amblyopes but 21.2% in normals. Non-dominant-eye sensitivity explained sensitivity at 10.6% of field locations in amblyopes but 19.4% in normals. Binocular summation provided the best description of the sensitivity profile in 6/10 amblyopes compared to 7/10 of normals. In three amblyopes, dominant-eye sensitivity most closely reflected binocular sensitivity (compared to two normals) and in the remaining amblyope, binocular sensitivity approximated to an average of the monocular sensitivities. Our results suggest a strong positive contribution in habitual viewing from the non-dominant eye in strabismic amblyopes. This is consistent with evidence from other sources that binocular mechanisms are frequently intact in strabismic and amblyopic individuals.
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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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    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.
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    Cognitive reframing for carers of people with dementia

    Vernooij-Dassen, M.; Draskovic, I.; McCleery, J.; Downs, Murna G. (2011)
    BACKGROUND: The balance of evidence about whether psychosocial interventions for caregivers of people with dementia could reduce carers' psychological morbidity and delay their relatives' institutionalisation is now widely regarded as moderately positive (Brodaty 2003; Spijker 2008). Multi-component, tailor-made psychosocial interventions are considered to be particularly promising (Brodaty 2003; Spijker 2008). These interventions involve multiple mechanisms of action. In this review we focused solely on the effectiveness of one element within psychosocial interventions, cognitive reframing. Cognitive reframing is a component of cognitive behavioral therapy (CBT). In dementia care, cognitive reframing interventions focus on family carers' maladaptive, self-defeating or distressing cognitions about their relatives' behaviors and about their own performance in the caring role. OBJECTIVES: The objective of this review was to evaluate the effectiveness of cognitive reframing interventions for family carers of people with dementia on their psychological morbidity and stress. SEARCH METHODS: The trials were identified by searching (5 April 2009) the Cochrane Dementia and Cognitive Improvement Group Specialized Register, which contains records from major healthcare databases: The Cochrane Library, MEDLINE, EMBASE, PsycINFO, CINAHL and LILACS, ongoing trial databases and grey literature sources. For more detailed information on what the Group's specialized register contains and to view the search strategies see the Cochrane Dementia and Cognitive Improvement Group methods used in reviews.The Cochrane Library, MEDLINE, EMBASE, PsycINFO, CINAHL, LILACS and a number of trial registers and grey literature sources were also searched separately on 5 April 2009. SELECTION CRITERIA: Randomised controlled trials of cognitive reframing interventions for family carers of people with dementia. DATA COLLECTION AND ANALYSIS: Three assessors (MVD, ID, JmC) independently judged whether the intervention being studied was documented in a trial; two assessors assessed trial quality. MAIN RESULTS: Pooled data indicated a beneficial effect of cognitive reframing interventions on carers' psychological morbidity, specifically anxiety (standardised mean difference (SMD) -0.21; 95% confidence interval (CI) -0.39 to -0.04), depression (SMD -0.66; 95% CI -1.27 to -0.05), and subjective stress (SMD -0.23; 95% CI -0.43 to -0.04). No effects were found for carers' coping, appraisal of the burden, reactions to their relatives' behaviors, or institutionalization of the person with dementia. AUTHORS' CONCLUSIONS: Cognitive reframing for family carers of people with dementia seems to reduce psychological morbidity and subjective stress but without altering appraisals of coping or burden. The results suggest that it may be an effective component of individualised, multi-component interventions for carers. Identifying studies with relevant interventions was a challenge for this review. The impact of cognitive reframing might be higher when used alongside other interventions because this offers better opportunities to tailor cognitive reframing to actual everyday carer problems.
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    Overgeneral autobiographical memory in Parkinson's disease

    Smith, Sarah J.; Souchay, C.; Conway, M.A. (2010)
    Autobiographical memory (AM) concerns the ability to remember past events from one's own life and consists of autobiographical knowledge (personal facts) and autobiographical incidents (personal events). The novelty of this research was to assess both personal factual and personal event AM in Parkinson's disease (PD) for specified lifetime periods. An autobiographical fluency task was used in which participants were asked to recall personal events and personal facts from five separate lifetime periods. Previous findings as well the brain regions affected in PD lead to the hypothesis that Parkinson's patients would recall less autobiographical memories especially for the most recent lifetime periods. Sixteen non-demented and non-depressed Parkinson's patients and sixteen age-education-matched controls participated. The results showed a temporal gradient for the recall of personal events in Parkinson's patients as they recalled fewer events for recent time periods. The PD group also had more difficulties in recalling autobiographical events rather than an autobiographical knowledge. The difficulty in recalling autobiographical events was characterized by overgenerality, with PD patients failing to generate specific episodic memories.
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    Barriers to advance care planning in chronic obstructive pulmonary disease

    Gott, M.; Gardiner, C.; Small, Neil A.; Payne, S.; Seamark, D.; Barnes, S.; Halpin, D.; Ruse, C. (2009)
    The English End of Life Care Strategy promises that all patients with advanced, life limiting illness will have the opportunity to participate in Advance Care Planning (ACP). For patients with Chronic Obstructive Pulmonary Disease (COPD), the barriers to this being achieved in practice are under-explored. Five focus groups were held with a total of 39 health care professionals involved in the care of patients with COPD. Participants reported that discussions relating to ACP are very rarely initiated with patients with COPD and identified the following barriers: inadequate information provision about the likely course of COPD at diagnosis; lack of consensus regarding who should initiate ACP and in which setting; connotations of comparing COPD with cancer; ACP discussions conflicting with goals of chronic disease management; and a lack of understanding of the meaning of 'end of life' within the context of COPD. The findings from this study indicate that, for patients with COPD, significant service improvement is needed before the objective of the End of Life Care Strategy regarding patient participation in end of life decision-making is to be achieved. Whilst the findings support the Strategy's recommendations regarding an urgent for both professional education and increased public education about end of life issues, they also indicate that these alone will not be enough to effect the level of change required. Consideration also needs to be given to the integration of chronic disease management and end of life care and to developing definitions of end of life care that fit with concepts of 'continuous palliation'.
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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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