Now showing items 1-20 of 1437

    • Social care planning and provision for people with young onset dementia and their families: Protocol for the DYNAMIC study.

      Quinn, Catherine; Young, Helen; Gridley, K.; Stamou, Vasileios; Mason, Clare; Oyebode, Jan (2024)
      Social care is vital to quality of life for people with young onset dementia and their families. Yet care is hugely variable, frequently lacking and poorly coordinated. We aim to establish current practice in English social care for people with young onset dementia and co-produce evidence-based recommendations and resources for improvement. In Work-Package 1, we will gather qualitative data from 25 people with young onset dementia and/or main supporters residing in England. We will ask them about their experiences of social care (broadly defined, including independent and voluntary sector provision) and suggestions for improvement. In Work-Package 2, we will conduct a short on-line survey with a wide range of staff with a role in adult social care in England. We will find out about current awareness, knowledge and practice and suggestions for improvements. Quantitative and qualitative analysis will provide a picture of current practice. In Work-Package 3, we will use convergence analysis to synthesise the findings from Work-Packages 1 and 2 and present the findings to a stakeholder workshop, to identify feasible priorities for improvement. We will establish what is already known about good practice relating to these key priorities using a scoping review and interviews with professionals. This knowledge will then feed into the co-production of resources and recommendations with key stakeholders to improve social care for people with young onset dementia and their families. This study seeks to address a gap in our understanding of social care provision for people with young onset dementia and develop recommendations and practical resources for improvements. The findings will help people with young onset dementia and supporters to receive higher quality social care. Study registration number: ISRCTN10653250.
    • A quantitative study examining infographic assessment guidelines for undergraduate nursing students with specific learning difficulties (SpLDs)

      Manchester, Kieran R.; Roberts, D. (2024-04)
      This research investigates the perceived clarity and usefulness of infographic versus traditional text-based assessment guidelines among undergraduate nursing students with and without specific learning difficulties (SpLDs). Through quantitative analysis, the study reveals that undergraduate nursing students with SpLDs significantly prefer infographics over text-based guidelines, both in terms of clarity and usefulness (p < .001). Interestingly, there were no statistically significant differences in the perceptions of students without SpLDs. These findings suggest that the use of infographics as a tool for presenting assessment guidelines could contribute to more inclusive educational practices. The research further highlights the potential of infographics to not only make complex information more accessible but also to cater to diverse learning needs. As higher education institutions strive to be more inclusive, adapting assessment guidelines to suit the varied learning styles and cognitive needs of all students, particularly those with SpLDs, becomes increasingly important. This paper provides initial evidence to support the adoption of infographic-based assessment guidelines as a step towards achieving this goal.
    • The nature of positive post-diagnostic support as experienced by people with young onset dementia

      Stamou, Vasileios; La Fontaine Papadopoulos, Jenny H.; O'Malley, M.; Jones, B.; Gage, H.; Parkes, J.; Carter, J.; Oyebode, Jan (2021)
      Objectives: Studies on service needs of people with young onset dementia have taken a problem-oriented approach with resulting recommendations focusing on reducing service shortcomings. This study aimed to build on ‘what works’ in real-life practice by exploring the nature of post-diagnostic support services that were perceived positively by younger people with dementia and carers. Method: Positive examples of support were gathered between August 2017 and September 2018, via a national survey. Inductive thematic analysis was employed to explore the nature of positively experienced services provided for younger people with dementia, including analysis of what was provided by positively experienced services. Results: Two hundred and thirty-three respondents reported 856 positive experiences of support. Data analysis yielded eight themes regarding the objectives of positive services: Specialist Advice and Information on Young Onset Dementia, Access to Age-appropriate Services, Interventions for Physical and Mental Health, Opportunities for Social Participation, Opportunities to Have a Voice, Enablement of Independence while Managing Risk, Enablement of Financial Stability, and Support Interventions for family relationships. Conclusion: The study findings (a) suggest that positive services may collectively create an enabling-protective circle that supports YPD to re-establish and maintain a positive identity in the face of young onset dementia, and (b) provide a basis from which future good practice can be developed.
    • 'Making the most of time during personal care' : nursing home staff experiences of meaningful engagement with residents with advanced dementia

      Haunch, K.; Downs, Murna G.; Oyebode, Jan (2023-12)
      Objectives: Dementia progressively affects cognitive functioning, including the ability to communicate. Those who struggle to communicate are often considered unable to relate to other people. Frontline care workers are in a position to connect with residents. However, we know little about their perspectives. The aim of this study was to understand how and when nursing home staff meaningfully engaged with residents with advanced dementia. Methods: Semi-structured interviews, supplemented by informal conversations, were conducted with 21 staff from seven nursing homes. Inductive thematic analysis identified themes in the accounts. Results: Four themes related to how staff engaged with residents with advanced dementia (initiating meaningful engagement, recognising subtle reactions, practising caring behaviours, patience and perseverance). Two themes related to when meaningful engagement occurred (lacking time to connect, making the most of time during personal care). Conclusion: A key barrier to implementing formal interventions to improve care is lack of staff time. Staff overcome this by using personal care time for meaningful engagement with residents. Their approach, developed through experience, is consonant with person-centred dementia care. Building on this, future research should use participatory approaches building on practice wisdom to further develop and evaluate meaningful engagement with residents with advanced dementia.
    • An evaluation of CT radiation doses within the Yorkshire Lung Screening Trial

      Iball, Gareth; Beeching, C.E.; Gabe, R.; Tam, H.Z.; Darby, M.; Crosbie, P.A.J.; Callister, M.E.J. (2024-02)
      Objectives; To evaluate radiation doses for all low-dose CT scans performed during the first year of a lung screening trial. Methods; For all lung screening scans that were performed using a CT protocol that delivered image quality meeting the RSNA QIBA criteria, , radiation dose metrics, participant height, weight, gender and age were recorded. Values of CTDIvol and DLP were evaluated as a function of weight in order to assess the performance of the scan protocol across the participant cohort. Calculated effective doses were used to establish the additional lifetime attributable cancer risks arising from trial scans. Results; Median values of CTDIvol, DLP and effective dose (IQR) from the 3521 scans were 1.1mGy (0.70), 42.4mGycm (24.9) and 1.15mSv (0.67), whilst for 60-80kg participants the values were 1.0mGy (0.30), 35.8mGycm (11.4) and 0.97mSv (0.31). A statistically significant correlation between CTDIvol and weight was identified for males (r=0.9123, p<0.001) and females (r=0.9052, p<0.001), however the effect of gender on CTDIvol was not statistically significant (p=0.2328) despite notable differences existing at the extremes of the weight range. The additional lifetime attributable cancer risks from a single scan were in the range 0.001-0.006%. Conclusions; Low radiation doses can be achieved across a typical lung screening cohort using scan protocols that have been shown to deliver high levels of image quality. The observed dose levels may be considered as typical values for lung screening scans on similar types of scanner for an equivalent participant cohort. Advances in Knowledge; Presentation of typical radiation dose levels for CT lung screening examinations in a large UK trial. Effective radiation doses can be of the order of 1mSv for standard sized participants. Lifetime attributable cancer risks resulting from a single LDCT scan did not exceed 0.006%.
    • Living well with dementia: An exploratory matched analysis of minority ethnic and white people with dementia and carers participating in the IDEAL programme

      Victor, C.R.; Gamble, L.D.; Pentecost, C.; Quinn, Catherine; Charlwood, C.; Matthews, F.E.; Clare, L. (2024-01)
      The increasing heterogeneity of the population of older people is reflected in an increasing number of people with dementia and carers drawn from minority ethnic groups. Data from the IDEAL study are used to compare indices of 'living well' among people with dementia and carers from ethnic minority groups with matched white peers. We used an exploratory cross-sectional case-control design to compare 'living well' for people with dementia and carers from minority ethnic and white groups. Measures for both groups were quality of life, life satisfaction, wellbeing, loneliness, and social isolation and, for carers, stress, relationship quality, role captivity and caring competence. The sample of people with dementia consisted of 20 minority ethnic and 60 white participants and for carers 15 and 45 respectively. People with dementia from minority ethnic groups had poorer quality of life (-4.74, 95% CI: -7.98 to -1.50) and higher loneliness (1.72, 95% CI: 0.78-2.66) whilst minority ethnic carers had higher stress (8.17, 95% CI: 1.72-14.63) and role captivity (2.00, 95% CI: 0.43-3.57) and lower relationship quality (-9.86, 95% CI: -14.24 to -5.48) than their white peers. Our exploratory study suggests that people with dementia from minority ethnic groups experience lower quality of life and carers experience higher stress and role captivity and lower relationship quality than their white peers. Confirmatory research with larger samples is required to facilitate analysis of the experiences of specific minority ethnic groups and examine the factors contributing to these disadvantages.
    • A participatory approach to understand what might be most meaningful to people living with dementia in a positive psychology intervention

      Jackman, V.; Wolverson, E.; Clarke, C.; Quinn, Catherine (2024)
      This study aimed to understand which character strengths are most important for people living with dementia and therefore which strengths-based psychological interventions could be most meaningful and acceptable. A participatory design, utilising Delphi methodology, was incorporated into an iterative three stage framework: (1) literature reviewed for Positive Psychology (PP) interventions and patient public involvement to define the character strengths; (2) modified Delphi (N = 10) identified which character strengths are most important for living with dementia; (3) focus groups (N = 14) explored which PP interventions are most acceptable and meaningful. Qualitative data from the focus groups was analysed using thematic analysis. Love, kindness and humour were deemed the most important character strengths for living with dementia. Qualitative data from the focus groups was captured in three superordinate themes: (1) lack of opportunity not capacity; (2) key considerations of PP interventions for people living with dementia; and (3) potential benefits of PP interventions. Love, kindness and humour come naturally to people with dementia, but people may lack social opportunities to use these strengths. Therefore, a PP intervention promoting positive emotion, social relationships and connection to one's values appears most meaningful and acceptable as this may provide a social context to use and maintain these strengths.
    • The Costs of Workplace Bullying

      Giga, Sabir I.; Hoel, H.; Duncan, L. (2008-05)
      This report presents the findings of a research study carried out within the remit of the Dignity at Work Partnership Project with an aim of developing the business case for confronting workplace bullying, and simultaneously identifying the implications for individuals, organisations and society in general.
    • Can animals tune tissue mechanics in response to changing environments caused by anthropogenic impacts?

      James, Rob S.; Seebacher, F.; Tallis, J. (2023-04)
      Anthropogenic climate change and pollution are impacting environments across the globe. This Review summarises the potential impact of such anthropogenic effects on animal tissue mechanics, given the consequences for animal locomotor performance and behaviour. More specifically, in light of current literature, this Review focuses on evaluating the acute and chronic effects of temperature on the mechanical function of muscle tissues. For ectotherms, maximal muscle performance typically occurs at temperatures approximating the natural environment of the species. However, species vary in their ability to acclimate to chronic changes in temperature, which is likely to have longer-term effects on species range. Some species undergo periods of dormancy to avoid extreme temperature or drought. Whilst the skeletal muscle of such species generally appears to be adapted to minimise muscle atrophy and maintain performance for emergence from dormancy, the increased occurrence of extreme climatic conditions may reduce the survival of individuals in such environments. This Review also considers the likely impact of anthropogenic pollutants, such as hormones and heavy metals, on animal tissue mechanics, noting the relative paucity of literature directly investigating this key area. Future work needs to determine the direct effects of anthropogenic environmental changes on animal tissues and related changes in locomotor performance and behaviour, including accounting for currently unknown interactions between environmental factors, e.g. temperature and pollutants.
    • Designing Eportfolio Based Learning Activities to Promote Learner Autonomy

      Currant, N.; Haigh, Jackie; Higgison, Carol; Hughes, Peter; Rodway, P.; Whitfield, Ruth (2010-04)
      This report is a summary of the activity and findings of a small-scale educational research project conducted as the part of the Fourth Cohort of the Inter/National Coalition for Research into Electronic Portfolios. The project was conducted between 2007 and 2010 at the University of Bradford in the UK. It investigates how academic staff are utilising eportfolio tools to support learner development, particularly within specific modules of study. In particular it aims to identify strategies that contribute to the development of learner autonomy. Modules from a range of subject areas: Psychology, Midwifery, Geography and Combined Studies were included in the study.
    • The potential of Dementia Care Mapping as a practice development tool for occupational therapists in South Africa

      du Toit, S.H.J.; Surr, Claire (2012)
      The quality of care for persons living with dementia in institutional care settings is of global concern. The provision of person-centred care (PCC) for people with dementia is internationally recognised as best practice, which promotes possibilities for people with dementia to experience well-being. However, there remains a lack of evidence of approaches that can help to support delivery of PCC for older people with dementia in long-term care, in South Africa. Dementia Care Mapping (DCM) is a successful practice development tool, originating in the UK, used for supporting the implementation of PCC. However, to date it has not been considered for use by South African occupational therapists working in residential care facilities. This article defines the components of the DCM tool, its process of use and potential outcomes for care practice. In an attempt to scrutinise the value of findings from an occupational therapy perspective, the Kawa Model is drawn upon to explain how the data from DCM can be interpreted. The Kawa Model provides a strong focus on how a sense of being is promoted by a person's context, and is an established vehicle to aid understanding of the potential for application of PCC in South African care facilities.
    • Development of an awareness-based intervention to enhance quality of life in severe dementia: trial platform

      Clare, L.; Woods, R.T.; Whitaker, R.; Wilson, B.A.; Downs, Murna G. (2010)
      Abstract Background: Quality of residential care for people with severe dementia is in urgent need of improvement. One reason for this may be the assumption that people with severe dementia are unaware of what is happening to them. However, there is converging evidence to suggest that global assumptions of unawareness are inappropriate. This trial platform study aims to assist care staff in perceiving and responding to subtle signs of awareness and thus enhance their practice. Methods/Design: In Stage One, a measure of awareness in severe dementia will be developed. Two focus groups and an expert panel will contribute to item and scale development. In Stage Two observational data will be used to further develop the measure. Working in four care homes, we will recruit 40 individuals with severe dementia who have no, or very limited, verbal communication. Data on inter-rater reliability and frequency of all items and exploratory factor analysis will be used to identify items to be retained. Test-retest and inter-rater reliability for the new measure will be calculated. Correlations with scores for well-being and behaviour and with proxy ratings of quality of life will provide an indication of concurrent validity. In Stage Three the new measure will be used in a single blind cluster randomised trial. Eight care homes will participate, with 10 residents recruited in each giving a total sample of 80 people with severe dementia. Homes will be randomised to intervention or usual care conditions. In the intervention condition, staff will receive training in using the new measure and will undertake observations of designated residents. For residents with dementia, outcomes will be assessed in terms of change from baseline in scores for behaviour, well-being and quality of life. For care staff, outcomes will be assessed in terms of change from baseline in scores for attitudes, care practice, and well-being. Discussion: The results will inform the design of a larger-scale trial intended to provide definitive evidence about the benefits of increasing the sensitivity of care staff to signs of awareness in residents with severe dementia. Trial Registration: ISRCTN59507580
    • ‘I don't do like I used to do’: A grounded theory approach to conceptualising awareness in people with moderate to severe dementia living in long-term care

      Clare, L.; Rowlands, J.; Bruce, Errollyn; Surr, Claire; Downs, Murna G. (2008-06)
      While awareness among people with mild to moderate dementia residing in the community has been extensively studied, little evidence has been presented regarding the extent to which people with moderate to severe dementia living in residential care show awareness of their own situation and functioning. The present study aimed to explore how differing degrees of awareness are manifested in the conversations and interactions of people with dementia living in residential care settings, and to identify theoretical and practical implications. Transcripts of 304 conversations with 80 individuals with dementia living in residential care homes in England and Wales were analysed using a grounded theory approach. All 80 participants demonstrated a degree of retained awareness, and there was considerable evidence of retained awareness throughout the conversations, expressed in relation to the three domains of self, relationship, and the environmental context. Two-thirds of participants also demonstrated at least one instance of unawareness, although demonstrations of retained awareness outweighed indications of unawareness. Unawareness was evident in relation to appraisal of functioning and the meaning ascribed to the situation. A grounded theory model of awareness in people with moderate to severe dementia who still communicate verbally proposes that demonstration of awareness involves a set of analytic and behavioural processes, a scope or timescale, and a focus. Awareness is demonstrated in relation to a given focus and scope through the involvement of cognitive processes of varying degrees of complexity, ranging from registering through appraising and interpreting to reflection. Unawareness may be demonstrated in relation to some elements of process, focus or scope, while other aspects remain unaffected. Understanding more about the capacity for retained awareness and the specific ways in which awareness can be compromised may assist care staff in responding effectively to residents' needs.
    • From Classroom to Clinic: Bridging the Gap in Nursing Anatomy and Physiology Education

      Manchester, Kieran R.; Roberts, D. (2023)
      Since the 1980 s, changes in nursing education have inadvertently led to diminishing anatomy and physiology content in curricula (Taylor et al., 2015). The need for nurses to have a thorough grounding in these subjects is undisputed; however, the pedagogical principles for anatomy and physiology education have been under scrutiny (Perkins, 2019). Anatomy and physiology are typically incorporated as part of bioscience, which also encompasses genetics, microbiology, pharmacology, and pathophysiology (Horiuchi-Hirose et al., 2023). Registered nurses and nursing students often express anxiety about studying bioscience and its perceived difficulty, largely due to difficulties in applying theory to practice (Craft et al., 2013, Craft et al., 2017, Meedya et al., 2019). Despite this, there remains a recognition that bioscience knowledge is important for effective nursing practice (Danielson and Berntsson, 2007, Horiuchi-Hirose et al., 2023).
    • Dyadic influences on awareness of condition in people with dementia: findings from the IDEAL cohort

      Alexander, C.M.; Martyr, A.; Gamble, L.D.; Quinn, Catherine; Pentecost, C.; Morris, R.G.; Clare, L. (2023-12)
      Introduction: The discrepancy between caregiver-ratings and self-ratings of abilities is commonly used to assess awareness in people with dementia. We investigated the contribution of caregiver and dyadic characteristics to the difference in perspective between caregiver-informants and people with dementia about difficulties experienced, when considering awareness of condition. Methods: We conducted exploratory cross-sectional analyses using data from the IDEAL cohort. Participants were 1,038 community-dwelling people with mild-to-moderate dementia, and coresident spouse/partner caregivers. The Representations and Adjustment to Dementia Index (RADIX) checklist reporting difficulties commonly experienced in dementia was completed by 960 caregiver-informants and 989 people with dementia. Difference in scores was calculated for 916 dyads. Demographic information, cognition, informant-rated functional ability and neuropsychiatric symptoms were recorded for the person with dementia. Self-reported data were collected on mood, comorbidity, religion, importance of religion, relationship quality, and caregiver stress. Results: For most dyads, caregivers reported more RADIX difficulties than people with dementia. Caregiver RADIX ratings were more closely associated with informant-rated functional ability and neuropsychiatric symptoms than with cognition. More RADIX difficulties and higher stress were reported by female caregivers. Greater RADIX difference was associated with more caregiver stress, and older age but less depression in people with dementia. Conclusion: Few dyadic characteristics were important, but caregiver stress was higher where caregivers reported more RADIX difficulties and/or the difference in perspective was greater, whereas partners with dementia reported better mood. In addition to offering information about awareness of condition, the caregiver rating and difference in perspectives could indicate where more support is needed.
    • Methods and approaches to facilitate inclusion of the views, perspectives and preferences of people with moderate-to-severe dementia in research: a mixed-methods systematic review

      Collins, R.; Martyr, A.; Hunt, A.; Quinn, Catherine; Pentecost, C.; Hughes, J.C.; Clare, L. (2024-01)
      Background: The perspectives of people with moderate-to-severe dementia are rarely directly elicited in research studies. Objectives: This systematic review will explore methods and approaches for including the perspectives and preferences of people with moderate-to-severe dementia in research. Methods: AgeLine, CINAHL, Embase, PsycINFO, PubMed, Social Policy and Practice and Web of Science were searched until June 16 2022. Study quality was assessed using the 16-item Quality Assessment Tool. We described specific communication tools, reviewed the evidence for their effectiveness and considered their strengths and limitations. We examined the more general communication skills and techniques applied to support the use of these tools using thematic synthesis. The review protocol was registered with PROSPERO CRD42019130386 and the review was conducted and reported according to PRISMA guidelines. Results: Seven studies reported in 11 publications were included. In these studies five specific communication tools were used: Talking Mats, Augmentative and Alternative Communication Flexiboard, generic photographs in combination with a preference placement board, consultation ballot and personalised communication prescriptions. Each tool identified had advantages and disadvantages depending on dementia severity, verbal or physical ability, expense, researcher training requirements and ease of use. Thematic synthesis identified five general approaches to optimising communication that were employed to support use of the tools: ensuring conversations are individual and person-centred, managing external influences, engaging others, creating structure and facilitation skills. Conclusion: All tools had some utility and there was no clear evidence to support the recommendation of any one specific tool; therefore, researchers are advised to select the tool most appropriate to their context. Implications for Practice: The findings offer general guidance for researchers and practitioners on how to facilitate communication with people with moderate-to-severe dementia.
    • Dyadic perspectives on loneliness and social isolation among people with dementia and spousal carers: findings from the IDEAL programme

      Rippon, I.; Victor, C.R.; Martyr, A.; Matthews, F.E.; Quinn, Catherine; Rusted, J.M.; Jones, R.W.; Collins, R.; van Horik, J.; Pentecost, C.; et al. (2023)
      This study aims to investigate the impact of self and partner experiences of loneliness and social isolation on life satisfaction in people with dementia and their spousal carers. We used data from 1042 dementia caregiving dyads in the Improving the experience of Dementia and Enhancing Active Life (IDEAL) programme cohort. Loneliness was measured using the six-item De Jong Gierveld loneliness scale and social isolation using the six-item Lubben Social Network Scale. Data were analysed using the Actor-Partner Interdependence Model framework. Self-rated loneliness was associated with poorer life satisfaction for both people with dementia and carers. The initial partner effects observed between the loneliness of the carer and the life satisfaction of the person with dementia and between social isolation reported by the person with dementia and life satisfaction of the carer were reduced to nonsignificance once the quality of the relationship between them was considered. Experiencing greater loneliness and social isolation is linked with reduced life satisfaction for people with dementia and carers. However, having a positive view of the quality of the relationship between them reduced the impact of loneliness and social isolation on life satisfaction. Findings suggest the need to consider the experiences of both the person with dementia and the carer when investigating the impact of loneliness and social isolation. Individual interventions to mitigate loneliness or isolation may enhance life satisfaction for both partners and not simply the intervention recipient.
    • Experiences of newly registered nurses transitioning from nursing student to registered nurse: a qualitative systematic review

      Brady, Jennie; Tatterton, Michael J. (2023-09)
      This is a summary of See et al.1 Newly registered nurses experience high levels of emotional exhaustion, stress and burnout, with high attrition rates in the first-year post-qualification. The purpose of this review was to consolidate the available evidence on the experiences of newly registered nurses transitioning from the role of student nurse to that of registered nurse.
    • The role of children’s hospices in supporting the implementation of perinatal palliative care and advance care planning in the United Kingdom

      Tatterton, Michael J. (2023)
      Commentary on: Shaw KL, Spry J, Cummins C, et al. Advance care planning in perinatal settings: national survey of implementation using Normalisation Process Theory. Archives of Disease in Childhood - Fetal and Neonatal Edition Published Online First: 14 September 2023. doi: 10.1136/archdischild-2023-325649.