• Protocol for the IDEAL-2 longitudinal study: following the experiences of people with dementia and their primary carers to understand what contributes to living well with dementia and enhances active life

      Silarova, B.; Nelis, S.M.; Ashworth, R.M.; Ballard, C.; Bienkiewicz, M.; Henderson, C.; Hillman, A.; Hindle, J.V.; Hughes, J.C.; Lamont, R.A.; et al. (2018-10)
      There is a major need for longitudinal research examining the experiences of people with dementia and their primary carers, as relatively little is known about how the factors associated with capability to ‘live well’ vary over time. The main aim of the IDEAL-2 study is to investigate how and why, over time, people with dementia and their primary carers might vary in their capability to live well with dementia, whilst exploring both their use of health and care services and their unmet needs. IDEAL-2 will build on the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort of 1547 people (who, at recruitment between July 2014 and July 2016, had mild-to-moderate dementia), and their 1283 primary carers in Great Britain. The existing cohort will be enriched with additional participants with mild-to-moderate dementia (and their primary carers where available and willing) from the following groups: people with rarer forms of dementia, and/or those who are ≥90 years or < 65 years of age at time of recruitment. We will assess the primary outcome, capability to live well with dementia, and the factors influencing it using questionnaires at yearly intervals for 3 years. Additionally, we will seek to link the cohort data with administrative data to obtain information about health service use. Some participants will be invited for in-depth face-to-face interviews. The cohort study will be supplemented by linked research focusing on: the co-production of new measures of living well; including the perspectives of people with advanced dementia living in residential care settings; including people with dementia from black, Asian, and minority ethnic groups; and understanding the experience of people living with undiagnosed dementia. IDEAL-2 will provide evidence about the key indicators of, and factors associated with, living well over the course of dementia and how these differ for particular subgroups. It will tell us which combinations of services and support are most beneficial and cost-effective. Moreover, the IDEAL-2 study will gather evidence from underresearched groups of people with dementia, who are likely to have their own distinct perceptions of living well.
    • Providing enhanced care in communities [editorial].

      Horne, Maria (2015-05)
      The NHS has always been a bargaining chip for politicians. Cuts to budgets; an ageing population; and more complex, comorbid long-term conditions have placed greater demands on health and care services. There continues to be pressure on GPs, community services, and the voluntary and social care sectors. Now that the political parties have presented their manifestos for the NHS, we need to consider what is right for patients and local communities.
    • Providing welfare advice in general practice: Referrals, issues and outcomes

      Greasley, Peter; Small, Neil A. (2009-12-14)
      General practices in the UK are increasingly hosting welfare advice services on their premises to address patients' social and economic needs. In this paper, the authors present the outcomes of a service providing welfare advice across 30 general practices in inner-city Bradford. A retrospective study of all patients referred for advice during the initial 24 months of the project was conducted. The following information was collected: patient demographics, source of referrals, advice issues raised and income generated through benefit claims. The advice workers saw 2484 patients dealing with over 4000 welfare advice issues. Demand for the service varied widely across practices, reflecting practice list size and engagement with the service by practice staff. The main source of referrals was general practitioners (28%), and disability-related welfare benefits constituted the largest category of advice issues. Sixty-nine per cent of patients seen for advice were of south Asian ethnic origin. The advice workers raised £2 389 255 in welfare benefit claims for patients, primarily through disability-related benefits. Approximately one in four patients referred for advice benefited financially. It is concluded that the service is an excellent strategy by which primary care organisations address the social, economic and environmental influences on the health of their population.
    • Psychological and social factors associated with coexisting frailty and cognitive impairment: A systematic review

      Ellwood, Alison; Mountain, Gail; Quinn, Catherine (2021)
      Those living with coexistent frailty and cognitive impairment are at risk of poorer health outcomes. Research often focuses on identifying biological factors. This review sought to identify the association psychological and social factors have with coexisting physical and cognitive decline. Six databases were systematically searched in July 2020. Studies included individuals aged 60 years or older identified as being both frail and cognitively impaired. A narrative synthesis examined patterns within the data. Nine studies were included, most employed a cross-sectional design. Depression was investigated by all nine studies, those with coexistent frailty and cognitive impairment had higher levels of depressive symptoms than peers. Findings were mixed on social factors, although broadly indicate lower education, living alone and lower material wealth were more frequent in those living with coexistent decline. Further research is needed to explore potentially modifiable psychological and social factors which could lead to the development of supportive interventions.
    • The psychological consequences of power on self-perception: implications for leadership

      Voyer, B.G.; McIntosh, Bryan (2013)
      Purpose – The purpose of this paper is to explore theoretical connections between the cognitive consequences of power on self-perception and the behaviours of leaders. Design/methodology/approach – A systematic literature review was carried out to investigate the psychological consequences of power in terms of self-perception, perspective taking abilities, emotions and behaviours. The literature reviewed is further integrated in a theoretical model, and a series of propositions suggesting a relation between power, perspective taking, self-construal and leadership are introduced. Findings – This paper argues that power creates both temporary and enduring cognitive changes that transform the way individuals assimilate and differentiate their self from others. This transforms the way individuals in power behave as leaders, as well as followers. Individuals’ self-construal and perspective taking seem to play a mediating role in determining the behaviours of powerful and powerless individuals. This relation is moderated by organizational culture and structure, as well as personality traits. Research limitations/implications – Further research is needed to test these propositions, including the existence of cross-cultural differences in the power – self-construal relation, and the consequences of holding different types of power on an individual's self-construal. For employees and consultants working in organizational development and organizational change, understanding the potential consequences of power in terms of self-perception will improve the understanding of promoting individuals to higher positions. The present research also bears implications for scholars interested in understanding cross-cultural and gender differences in leadership. Originality/value – This conceptualization of self-construal as an interface between power and leadership reconcile the individual dynamics of trait theories of leadership and the environmental positions of situational theories of leadership. The paper discusses elements considered critical for design of leadership programs in the workplace, professional development and programs to shape the design of leadership.
    • Psychological factors and delayed healing.

      Moffatt, C.; Vowden, Kath; Price, P; Vowden, Peter (2008)
    • Psychological predictors of 'living well' with dementia: findings from the IDEAL study

      Lamont, R.A.; Nelis, S.M.; Quinn, Catherine; Martyr, A.; Rippon, I.; Kopelman, M.D.; Hindle, J.V.; Jones, R.W.; Litherland, R.; Clare, L. (2019)
      ncreasingly, research has explored how psychological resources enable adaptation to illness. However, it is unclear whether psychological resources protect against the potential negative effects on living well with a progressive and life-limiting condition such as dementia. This paper examines the association between psychological resources and the ability to ‘live well’ with dementia. Data from 1547 people with mild-to-moderate dementia in the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort were used. Multivariate linear regression was employed to examine the association between self-reported measures of psychological resources (self-efficacy, optimism and self-esteem) and indices of capability to ‘live well’ (quality of life, well-being and life satisfaction). All three measures of psychological resources had positive and independent associations with indices of living well and the effect sizes were similar. Effect sizes reduced when accounting for shared variance between psychological resources, showing some overlap in these constructs. Self-efficacy, optimism and self-esteem were each associated with capability to ‘live well’. Overlap between these three resources is evident and when combined they may provide greater resilience when dealing with the challenges of living with dementia. Interventions for people with dementia could seek to improve levels of these potentially-modifiable psychological resources.
    • Psychological processes in adapting to dementia: illness representations among the IDEAL cohort

      Clare, L.; Gamble, L.D.; Martyr, A.; Quinn, Catherine; Litherland, R.; Morris, R.G.; Jones, I.R.; Matthews, F.E. (2022)
      How people understand and adapt to living with dementia may influence well-being. Leventhal’s Common Sense Model (CSM) of Self-Regulation provides a theoretical basis for exploring this process. We used cross-sectional and longitudinal data from 1,109 people with mild-to-moderate dementia in the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort. We elicited dementia representations (DRs) using the Representations and Adjustment to Dementia Index (RADIX), a validated measure based on the CSM, identified groups sharing distinct DR profiles, and explored predictors of group membership and associations with well-being, and whether problem-focused coping played a mediating role in these associations. We identified four DR classes: people who see the condition as a disease and adopt a diagnostic label; people who see the condition as a disease but refer to symptoms rather than a diagnostic label; those who see the condition as part of aging; and those who are unsure how to make sense of the condition. A fifth group did not acknowledge any difficulties. “Disease” representations were associated with better cognition and younger age, while “aging” and “no problem” representations were associated with better mood and well-being. The association with well-being remained stable over 24 months. There was limited partial support for a mediating role of problem-focused coping. Variations in DRs may reflect individual differences in the psychological processes involved in adjusting to dementia. DRs provide a framework for personalizing and tailoring both communications about dementia and interventions aimed at supporting people in coping with dementia. There is a need to debate what constitutes a positive DR and how its development might be encouraged.
    • Psychological theories of medication use

      Lawton, R.; Armitage, Gerry R. (2015)
    • The Psychology of Transference: Gender and Access to Training—the Mechanisms of Disadvantage

      McIntosh, Bryan; Prowse, Julie M.; Archibong, Uduak E. (2015-07-17)
      Within nursing, career breaks have an impact on women's career outcomes. However, the causal mechanisms that explain the transfer of women's relative reduced career outcomes remain unclear. This article examines the relationships between career breaks, part-time working, and access to training/updating skills in determining nurses' career outcomes. We consider this to be a mechanism of transferring disadvantage both within and between genders within nursing. This qualitative research involved in-depth interviews with 32 registered female nurses with and without children. They were employed in “acute” nursing and worked as registered Band 4 to “senior nurse managers” and were between 25 and 60 years old. They worked or had worked under a variety of employment conditions. Some, but not all, had taken career breaks or requested or attained postregistration training. We found that restricted access to training for part-time nurses and limited opportunity to update their skills following a return from a career break are determining factors affecting the career outcomes of nurses. The findings suggest that it is related to rationing of training for those returning from career breaks, based on the availability of a supply of newly qualified nurses meeting the numerical demand, financial constraints, operational imperatives, and organizational values.
    • Psychometric evaluation of the Cohen-Mansfield Agitation Inventory in an acute general hospital setting

      Kupeli, N.; Vickerstaff, V.; White, N.; Lord, Kathryn; Scott, S.; Jones, L.; Sampson, E.L. (2018-01)
      Objectives The Cohen-Mansfield Agitation Inventory (CMAI; (Cohen-Mansfield and Kerin, 1986)) is a well-known tool for assessing agitated behaviours in people with dementia who reside in long-term care. No studies have evaluated the psychometric qualities and factor structure of the CMAI in acute general hospitals, a setting where people with demand may become agitated. Method Longitudinal study investigating pain, agitation and behavioural problems in 230 people with dementia admitted to acute general hospitals in 2011–2012. Cohen-Mansfield Agitation Inventory was completed as part of a battery of assessments including PAINAD to measure pain. Results A nine-item two-factor model of aggressive and nonaggressive behaviours proved to be the best-fitting measurement model in this sample, (χ2 = 96.3, df = 26, p<0.001; BIC [Bayesian Information Criterion] = 4593.06, CFI [Comparative Fit Index] = 0.884, TLI [Tucker Lewis Index] = 0.839, RMSEA [Root Mean Square Error of the Approximation] = 0.108). Although similar to the original factor structure, the new model resulted in the elimination of item 13 (screaming). Validity was confirmed with the shortened CMAI showing similar associations with pain as the original version of the CMAI, in particular the link between aggressive behaviours and pain. Conclusion The factor structure of the CMAI was broadly consistent with the original solution although a large number of items were removed. Scales reflecting physical and verbal aggression were combined to form an Aggressive factor, and physical and verbal nonaggressive behaviours were combined to form the Nonaggressive factor. A shorter, more concise version of the CMAI was developed for use in acute general hospital settings. Copyright © 2017 John Wiley & Sons, Ltd.
    • Psychosocial aspects of coeliac disease: a cross-sectional survey of a UK population.

      Ford, S.; Howard, R.A.; Oyebode, Jan R. (2012-11)
      Objectives. Coeliac disease (CD) is an autoimmune condition managed by a lifelong therapeutic gluten-free diet. Previous research suggests that the chronicity of CD, the limitations imposed by the gluten-free diet, and the risk of other associated diseases can have a negative impact on health-related quality of life (HRQoL) and psychological well-being. The aim of this study was to explore the illness perceptions and self-efficacy beliefs of adults with CD in the United Kingdom and to report their subjective levels of HRQoL and psychological well-being. Design. The study employed a cross-sectional postal questionnaire design. Method. Participants (n= 288) were adults with CD recruited via Coeliac UK. Measures of well-being, HRQoL, self-efficacy, illness perceptions, and dietary self-management were analysed. Preliminary descriptive and univariate procedures were employed before bivariate tests of association or difference were carried out. Backward stepwise multiple regression analysis was used to investigate the predictive strength of variables on well-being, quality of life, and self-efficacy. Logistic regression was used to look at the influence of variables on adherence. Results. Results indicate that HRQoL and psychological well-being were comparable to those found in previous related studies. Participants with weak beliefs in the serious consequences of CD and poorer emotional reactions to the condition had a greater likelihood of having enhanced HRQoL, improved psychological well-being, and higher self-efficacy. Strong beliefs in personal control and a greater perceived understanding of CD were associated with greater self-efficacy. Conclusions. Perceived self-efficacy and illness perceptions could play a role in informing psychological interventions for individuals with CD.
    • Psychosocial interventions for community dwelling people following diagnosis of mild to moderate dementia. Findings of a systematic scoping review

      Keogh, F.; Mountain, Gail; Joddrell, P.; Lord, Kathryn (2019-06)
      National policies and evidence reviews recommend psychosocial interventions (PIs) as an essential support, particularly in the period following dementia diagnosis. However, the availability and uptake of these interventions is comparatively low. One of the reasons for this is that clinicians lack information about what might be provided and the potential benefits of different interventions. This paper identifies and describes psychosocial interventions for community dwelling people following diagnosis of mild to moderate dementia and presents the available evidence to inform practice decisions. A systematic scoping review was employed to map the evidence relating to PIs for this group. This identified 63 relevant studies, testing 69 interventions, which could be grouped into six categories; 20 cognition-oriented interventions; 11 behaviour-oriented; 11 stimulation-oriented; 13 emotion-oriented, 5 social-oriented and 9 multi-modal. There were three targets for outcome measurement of these PIs; the person with dementia, the family carer and the person-carer dyad. Over 154 outcome measures were identified in the studies with outcomes measured across 11 main domains. The lack of a classification framework for PIs means it is difficult to create a meaningful synthesis of the breadth of relevant evidence to guide clinical practice. Possible dimensions of a classification framework are proposed to begin to address this gap.
    • Psychosocial interventions for people with dementia: An overview and commentary on recent developments

      Oyebode, Jan R.; Parveen, Sahdia (2019-01-01)
      An influential review in 2010 concluded that non-pharmacological multi-component interventions have positive effects on cognitive functioning, activities of daily living, behaviour and mood of people with dementia. Our aim here is to provide an up-to-date overview of research into psychosocial interventions and their impact on psychosocial outcomes. We focused on randomised controlled trials, controlled studies and reviews published between October 2008 and August 2015, since the earlier review. The search of PsychInfo, Medline and the Cochrane database of systematic reviews yielded 61 relevant articles, organised into four themes echoing key phases of the care pathway: Living at home with dementia (five reviews, eight studies), carer interventions (three reviews, four studies), interventions in residential care (16 reviews, 12 studies) and end-of-life care (three reviews, two studies), along with an additional group spanning community and institutional settings (six reviews, two studies). Community findings suggested that appointment of dementia specialists and attention to case management can produce positive outcomes; physical therapies, cognitive training and modified cognitive behaviour therapy also had a range of benefits. There was more limited evidence of positive benefits for people with dementia through interventions with family carers. Thirty-two articles focused on the management of ‘behavioural symptoms’ through a range of interventions all of which had some evidence of benefit. Also a range of multi-component and specific interventions had benefits for cognitive, emotional and behavioural well-being of people with dementia in residential settings, as well as for quality of life. Overall, interventions tended to be short term with impact only measured in the short term. We recommend further research on interventions to promote living well in the community post-diagnosis and to address end-of-life care. Development of psychosocial interventions would benefit from moving beyond the focus on control of behaviours to focus on wider aspects of life for people with dementia.
    • The public health end-of-life care movement: History, principles, and styles of practice

      Karapliagou, Aliki; Kellehear, Allan; Wegleitner, K. (Oxford University Press, 2018)
    • Putting Life in Years (PLINY): a randomised controlled trial and mixed-methods process evaluation of a telephone friendship intervention to improve mental well-being in independently living older people

      Hind, D.; Mountain, Gail; Gossage-Worrall, R.; Walters, S.J.; Duncan, R.; Newbould, L.; Rex, S.; Jones, C.; Bowling, A.; Cattan, M.; et al. (2014-12)
      Background: Social isolation in older adults is associated with morbidity. Evaluating interventions to promote social engagement is a research priority. Methods: A parallel-group randomised controlled trial was planned to evaluate whether telephone friendship (TF) improves the well-being of independently living older people. An internal pilot aimed to recruit 68 participants by 30 September 2012, with 80% retained at 6 months. Randomisation was web based and only analysts were blind to allocation. A service provider was contracted to train 10 volunteer facilitators by 1 April 2012 and 10 more by 1 September 2012. Participants were aged > 74 years with good cognitive function and living independently in an urban community. The intervention arm of the trial consisted of manualised TF with standardised training: (1) one-to-one befriending (10- to 20-minute calls once per week for up to 6 weeks made by volunteer facilitators) followed by (2) TF groups of six participants (1-hour teleconferences once per week for 12 weeks facilitated by the same volunteer). Friendship groups aimed to enhance social support and increase opportunities for social interaction to maintain well-being. This was compared with usual health and social care provision. The primary clinical outcome was the Short Form questionnaire-36 items (SF-36) mental health dimension score at 6 months post randomisation. Qualitative research assessing intervention acceptability (participants) and implementation issues (facilitators) and an intervention fidelity assessment were also carried out. Intervention implementation was documented through e-mails, meeting minutes and field notes. Acceptability was assessed through framework analysis of semistructured interviews. Two researchers coded audio recordings of telephone discussions for fidelity using a specially designed checklist. Results: In total, 157 people were randomised to the TF group (n = 78) or the control group (n = 79). Pilot recruitment and retention targets were met. Ten volunteers were trained by 1 September 2012; after volunteer attrition, three out of the 10 volunteers delivered the group intervention. In total, 50 out of the 78 TF participants did not receive the intervention and the trial was closed early. A total of 56 people contributed primary outcome data from the TF (n = 26) and control (n = 30) arms. The mean difference in SF-36 mental health score was 9.5 (95% confidence interval 4.5 to 14.5) after adjusting for age, sex and baseline score. Participants who were interviewed (n = 19) generally declared that the intervention was acceptable. Participant dissatisfaction with closure of the groups was reported (n = 4). Dissatisfaction focused on lack of face-to-face contact and shared interests or attitudes. Larger groups experienced better cohesion. Interviewed volunteers (n = 3) expressed a lack of clarity about procedures, anxieties about managing group dynamics and a lack of confidence in the training and in their management and found scheduling calls challenging. Training was 91–95% adherent with the checklist (39 items; three groups). Intervention fidelity ranged from 30.2% to 52.1% (28–41 items; three groups, three time points), indicating that groups were not facilitated in line with training, namely with regard to the setting of ground rules, the maintenance of confidentiality and facilitating contact between participants. Conclusions: Although the trial was unsuccessful for a range of logistical reasons, the experience gained is of value for the design and conduct of future trials. Participant recruitment and retention were feasible. Small voluntary sector organisations may be unable to recruit, train and retain adequate numbers of volunteers to implement new services at scale over a short time scale. Such risks might be mitigated by multicentre trials using multiple providers and specialists to recruit and manage volunteers.
    • ‘Putting life in years’ (PLINY) telephone friendship groups research study: pilot randomised controlled trial

      Mountain, Gail; Hind, D.; Gossage-Worrall, R.; Walters, S.J.; Duncan, R.; Newbould, L.; Rex, S.; Jones, C.; Bowling, A.; Cattan, M.; et al. (2014-04-24)
      Background: Loneliness in older people is associated with poor health-related quality of life (HRQoL). We undertook a parallel-group randomised controlled trial to evaluate the effectiveness and cost-effectiveness of telephone befriending for the maintenance of HRQoL in older people. An internal pilot tested the feasibility of the trial and intervention. Methods: Participants aged >74 years, with good cognitive function, living independently in one UK city were recruited through general practices and other sources, then randomised to: (1) 6 weeks of short one-to-one telephone calls, followed by 12 weeks of group telephone calls with up to six participants, led by a trained volunteer facilitator; or (2) a control group. The main trial required the recruitment of 248 participants in a 1-year accrual window, of whom 124 were to receive telephone befriending. The pilot specified three success criteria which had to be met in order to progress the main trial to completion: recruitment of 68 participants in 95 days; retention of 80% participants at 6 months; successful delivery of telephone befriending by local franchise of national charity. The primary clinical outcome was the Short Form (36) Health Instrument (SF-36) Mental Health (MH) dimension score collected by telephone 6 months following randomisation. Results: We informed 9,579 older people about the study. Seventy consenting participants were randomised to the pilot in 95 days, with 56 (80%) providing valid primary outcome data (26 intervention, 30 control). Twenty-four participants randomly allocated to the research arm actually received telephone befriending due to poor recruitment and retention of volunteer facilitators. The trial was closed early as a result. The mean 6-month SF-36 MH scores were 78 (SD 18) and 71 (SD 21) for the intervention and control groups, respectively (mean difference, 7; 95% CI, −3 to 16). Conclusions: Recruitment and retention of participants to a definitive trial with a recruitment window of 1 year is feasible. For the voluntary sector to recruit sufficient volunteers to match demand for telephone befriending created by trial recruitment would require the study to be run in more than one major population centre, and/or involve dedicated management of volunteers. Trial registration: ISRCTN28645428.
    • QualDash: Adaptable Generation of Visualisation Dashboards for Healthcare Quality Improvement

      Elshehaly, Mai; Randell, Rebecca; Brehmer, M.; McVey, Lynn; Alvarado, Natasha; Gale, C.P.; Ruddle, R.A. (2021-02)
      Adapting dashboard design to different contexts of use is an open question in visualisation research. Dashboard designers often seek to strike a balance between dashboard adaptability and ease-of-use, and in hospitals challenges arise from the vast diversity of key metrics, data models and users involved at different organizational levels. In this design study, we present QualDash, a dashboard generation engine that allows for the dynamic configuration and deployment of visualisation dashboards for healthcare quality improvement (QI). We present a rigorous task analysis based on interviews with healthcare professionals, a co-design workshop and a series of one-on-one meetings with front line analysts. From these activities we define a metric card metaphor as a unit of visual analysis in healthcare QI, using this concept as a building block for generating highly adaptable dashboards, and leading to the design of a Metric Specification Structure (MSS). Each MSS is a JSON structure which enables dashboard authors to concisely configure unit-specific variants of a metric card, while offloading common patterns that are shared across cards to be preset by the engine. We reflect on deploying and iterating the design of QualDash in cardiology wards and pediatric intensive care units of five NHS hospitals. Finally, we report evaluation results that demonstrate the adaptability, ease-of-use and usefulness of QualDash in a real-world scenario.