• 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.
    • A qualitative descriptive analysis of nurses' perceptions of hospice care for deceased children following organ donation in hospice cool rooms

      Tatterton, Michael J.; Summers, R.; Brennan, C.Y. (2019-04-02)
      Following organ donation, bodies of children are generally cared for in hospital mortuaries or by funeral directors, and their families are offered little routine bereavement support. A partnership between an organ donation nursing team and regional children's hospice trialled an initiative where families were offered bereavement support from the hospice, and their child's body was cared for in a 'cool room' after death. Hospice services are usually restricted to children with life-limiting conditions, and their families. To explore the perceptions and experience of nursing staff who are involved in supporting families of children and young people who have been cared for in children's hospice cool rooms after death, following organ donation. A qualitative exploratory study consisting of a focus group interview with registered nurses from the children's hospice and organ donation teams. A purposeful sample of nurses was recruited. Data were collected in a digitally-recorded focus group interview during March 2018. The interview was transcribed and analysed using a qualitative content approach. Six nurses participated in the focus group. Analysis revealed five themes that characterised the perceptions of nurses: (i) barriers to care, (ii) bereavement care for families, (iii) impact on families and staff, (iv) influencers and enablers of change, and (v) sustainability of new practices. Nurses perceived the long-term, responsive and family-centred approach to bereavement support as a strength of the hospice model, reducing the experience of moral distress in organ donation nurses.
    • A qualitative formative evaluation of a patient centered patient safety intervention delivered in collaboration with hospital volunteers

      Louch, G.; O'Hara, J.K.; Mohammed, Mohammed A. (2017-10)
      Background: Evidence suggests that patients can meaningfully feed back to healthcare providers about the safety of their care. The PRASE (Patient Reporting and Action for a Safe Environment) intervention provides a way to systematically collect feedback from patients to support service improvement. The intervention is being implemented in acute care settings with patient feedback collected by hospital volunteers for the first time. Objective: To undertake a formative evaluation which explores the feasibility and acceptability of the PRASE intervention delivered in collaboration with hospital volunteers from the perspectives of key stakeholders. Design: A qualitative evaluation design was adopted across two acute NHS Trusts in the UK between July 2014 and November 2015. We conducted five focus groups with hospital volunteers (n = 15), voluntary services and patient experience staff (n = 3) and semistructured interviews with ward staff (n = 5). Data were interpreted using framework analysis. Results: All stakeholders were positive about the PRASE intervention as a way to support service improvement, and the benefits of involving volunteers. Volunteers felt adequate training and support would be essential for retention. Staff concentrated on the infrastructure needed for implementation and raised concerns around sustainability. Findings were fed back to the implementation team to support revisions to the intervention moving into the subsequent summative evaluation phase. Conclusion: Although there are concerns regarding sustainability in practice, the PRASE intervention delivered in collaboration with hospital volunteers is a promising approach to collect patient feedback for service improvement.
    • Qualitatively exploring the suitability of tablet computers to encourage participation with activities by people with moderate stage dementia

      Smith, S.K.; Mountain, Gail; Hawkins, R.J. (2018)
      Introduction: Opportunities to participate with enjoyable activities is one of the most frequently reported unmet needs by the person living with dementia. Enabling and intuitive technologies may offer accessible ways to engage with such activities. Objectives: To explore how tablet computers might encourage participation in enjoyable activities by people with moderate levels of dementia and to consider how such technologies might be incorporated into the repertoire of activities currently provided through day care settings. Methods: A focused visual ethnographic approach was developed specifically to meet the research objectives. Twelve participants attending a community day care centre and nine supporters (both volunteers and paid staff) consented to take part in the research. Technology facilitated group activity sessions took place twice a week for a period of four weeks and all were video recorded. Findings: Video analysis demonstrated that the majority of people with dementia found the technology an effective means of participating in enjoyable activities. Analysis also revealed the extent to which participation relies on the existence of effective support. It showed how maintaining focus on retained strengths and abilities enabled the group overall to meet and often exceed their own and others perceived capacity to participate. Finally, analysis confirmed the importance of enjoyment of activities ‘in the moment’ and the need for those supporting people in the moderate stages of dementia to acknowledge and work with this. Conclusion: The use of tablet computers to enhance participation in sociable and enjoyable activities in day care settings is realistic and achievable if supported appropriately.
    • Quality and safety between ward and board: a biography of artefacts study

      Keen, J.; Nicklin, E.; Long, A.; Randell, Rebecca; Wickramasekera, N.; Gates, C.; Ginn, C.; McGinnis, E.; Willis, S.; Whittle, J. (2018-06)
      Background: There have been concerns about the quality and safety of NHS hospital services since the turn of the millennium. This study investigated the progress that acute NHS hospital trusts have made in developing and using technology infrastructures to enable them to monitor quality and safety following the publication in 2013 of the second Francis report on the scandal at Mid Staffordshire NHS Foundation Trust (The Mid Staffordshire NHS Foundation Trust Public Inquiry. Chaired by Sir Robert Francis QC. Report of the Mid Staffordshire NHS Foundation Trust Public Inquiry. HC 898. London: The Stationery Office; 2013). Methods: A telephone survey of 15 acute NHS trusts in the Yorkshire and the Humber region, and a review of board papers of all acute NHS trusts in England for January 2015, were undertaken. The telephone survey was used to identify trusts for a larger field study, which was undertaken in four acute NHS trusts between April 2015 and September 2016. The methods included the direct observation of the use of whiteboards and other technologies on two wards in each trust, an observation of board quality committees, semistructured interviews and an analysis of the quality and safety data in board papers. Published sources about national and local agencies were reviewed to identify the trust quality and safety data that these agencies accessed and used. An interview programme was also undertaken with those organisations. The Biography of Artefacts approach was used to analyse the data. Findings: The data and technology infrastructures within trusts had developed over many years. The overall design had been substantially determined by national agencies, and was geared to data processing: capturing and validating data for submission to national agencies. Trust boards had taken advantage of these data and used them to provide assurance about quality and safety. Less positively, the infrastructures were fragmented, with different technologies used to handle different quality and safety data. Real-time management systems on wards, including electronic whiteboards and mobile devices, were used and valued by nurses and other staff. The systems support the proactive management of clinical risks. These developments have occurred within a broad context, with trusts focusing on improving the quality and safety of services and publishing far more data on their performance than they did just 3 years earlier. Trust-level data suggest that quality and safety improved at all four trusts between 2013 and 2016. Our findings indicate that the technology infrastructures contributed to these improvements. There remains considerable scope to rationalise those infrastructures.
    • Quality of care in diabetic patients attending routine primary care clinics compared with those attending GP specialist clinics.

      Ismail, Hanif; Wright, J.; Rhodes, P.J.; Scally, Andy J. (2006)
      Aim To determine the impact on clinical outcomes of specialist diabetes clinics compared with routine primary care clinics. Methods Observational study measuring clinical performance (process/outcome measures) in the primary care sector. A cohort of patients attending specialist diabetes clinics was compared with a control cohort of patients attending routine primary care clinics. Results Patients seen in specialist diabetes clinics had a significantly higher HbA1c than patients in routine primary care clinics (mean difference 0.58%; P < 0.001) but there was no significant difference in rate of improvement with visits compared with primary care clinics. In contrast, patients seen in the routine primary care clinics had significantly higher cholesterol levels (mean difference 0.24 mmol/l; P < 0.001) compared with patients in specialist diabetes clinics and their improvement was significantly greater over time (mean difference 0.14 mmol/l per visit compared with 0.10 mmol/l; P < 0.006). Patients in routine primary care clinics also had significantly higher diastolic blood pressure (mean difference 1.6 mmHg; P < 0.007) but there was no difference in improvement with time compared with specialist diabetes clinics. Uptake of podiatry and retinal screening was significantly lower in patients attending routine primary care clinics, but this difference disappeared with time, with significant increases in uptake in the primary care clinic group. Weight increased in both groups significantly with time, but more so in the specialist clinic patients (mean increase 0.18 kg per visit more compared with routine clinic primary care patients; P < 0.001). Conclusions This study provides evidence that the provision of primary care services for patients with diabetes, whether traditional general practitioner clinics or diabetes clinics run by general practitioners with special interests, is effective in reducing HbA1c, cholesterol and blood pressure. However, the same provision of care was unable to prevent increasing weight or creatinine over time. No evidence was found that patients in specialist clinics do better than patients in routine primary care clinics.
    • Quantitative proteomic profiling of matched normal and tumor breast tissues.

      Sutton, Chris W.; Rustogi, Nitin; Gurkan, C.; Scally, Andy J.; Loizidou, M.A.; Hadjisavvas, A.; Kyriacou, K. (2010)
      Proteomic analysis of breast cancer tissue has proven difficult due to its inherent histological complexity. This pilot study presents preliminary evidence for the ability to differentiate adenoma and invasive carcinoma by measuring changes in proteomic profile of matched normal and disease tissues. A dual lysis buffer method was used to maximize protein extraction from each biopsy, proteins digested with trypsin, and the resulting peptides iTRAQ labeled. After combining, the peptide mixtures they were separated using preparative IEF followed by RP nanoHPLC. Following MALDI MS/MS and database searching, identified proteins were combined into a nonredundant list of 481 proteins with associated normal/tumor iTRAQ ratios for each patient. Proteins were categorized by location as blood, extracellular, and cellular, and the iTRAQ ratios were normalized to enable comparison between patients. Of those proteins significantly changed (upper or lower quartile) between matched normal and disease tissues, those from two invasive carcinoma patients had >50% in common with each other but <22% in common with an adenoma patient. In invasive carcinoma patients, several cellular and extracellular proteins that were significantly increased (Periostin, Small breast epithelial mucin) or decreased (Kinectin) have previously been associated with breast cancer, thereby supporting this approach for a larger disease-stage characterization effort.