ORCID Profile
0000-0002-5885-918X
Current Organisation
University of Hertfordshire
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Publisher: Springer Science and Business Media LLC
Date: 12-2015
Publisher: Springer Science and Business Media LLC
Date: 31-10-2014
Publisher: Oxford University Press (OUP)
Date: 30-04-2009
DOI: 10.1093/HER/CYP025
Abstract: Teenage pregnancy prevention programmes targeted at young women have received considerable attention from researchers and programme developers. However, to date, relatively limited information is available on preventing teenage fatherhood or improving outcomes for young fathers. A notable gap is concerned with understanding the forms of sexual health programmes that are most effective from the perspective of young men. We conducted a systematic mapping to identify studies involving young men aimed at preventing teenage pregnancy, improving outcomes for teenage fathers or exploring the perspectives of young men around pregnancy and fatherhood. We searched a wide range of electronic databases from January 1996 to August 2008. Three quantitative and 15 qualitative studies were identified, of which nine were UK based. Key themes related to the inappropriateness of current sexual health promotion to respond to the needs of young men. While young men often possessed very similar ideals to young women, existing programmes were problematic when they negatively stereotyped young men and ineffectively addressed models of masculinity or the difficulties young men may have forming meaningful relationships. Further investigations are required on programme development for young men, particularly on sexual health promotion interventions for 'looked-after' young men and those from unstable childhoods.
Publisher: Springer Science and Business Media LLC
Date: 07-01-2016
Publisher: SAGE Publications
Date: 03-09-2021
DOI: 10.1177/02692163211043374
Abstract: Palliative care for people with dementia dying in care homes is an important aspect of long-term care. Whilst there is consensus about the principles of palliative care, less is known about how care home staff negotiate and influence decisions around end of life and how organisational context shapes that process. To explore the views and experiences of care home staff and palliative care specialists on end of life care in care homes and understand how care home settings affected palliative care provision in England and Australia. Eight focus groups in Australia and England with care home staff and palliative care specialists ( n = 49). Reflexive thematic analysis was undertaken. Australian participants reported collaboration between care home staff, visiting professions and family members though case conferences. English participants discussed resident-focussed involvement from specialists that was less formally organised. Negotiating roles and responsibilities in end of life care the importance of relationships to overcome deficiencies in formal processes and the legitimacy and authority of advance care planning at times of crisis were recurring themes. The organisation and embedding of end of life care in processes and practices of care homes differed this closely linked to care home procedures in Australia but was less apparent in England. In both countries, partnership working was recognised and valued as key to effective palliative care. Work that enables care home staff to identify challenges with visiting professionals, such as agreeing priorities for care and negotiating their shared responsibilities, may lead to context-sensitive, sustainable solutions.
Publisher: University of Hertfordshire
Date: 2017
DOI: 10.18745/PB.19189
Publisher: Springer Science and Business Media LLC
Date: 18-07-2018
Publisher: Cambridge University Press (CUP)
Date: 07-2007
Publisher: BMJ
Date: 11-2018
DOI: 10.1136/BMJOPEN-2018-026531
Abstract: Many people living with advanced dementia live and die in nursing care homes. The quality of life, care and dying experienced by these people is variable. Namaste Care is a multisensory programme of care developed for people with advanced dementia. While there is emerging evidence that Namaste Care may be beneficial for people with dementia, there is a need to conduct a feasibility study to establish the optimum way of delivering this complex intervention and whether benefits can be demonstrated in end-of-life care, for in iduals and service delivery. The aim of the study is to ascertain the feasibility of conducting a full trial of the Namaste Care intervention. A feasibility study, comprising a parallel, two-arm, multicentre cluster controlled randomised trial with embedded process and economic evaluation. Nursing care homes (total of eight) who deliver care to those with advanced dementia will be randomly allocated to intervention (delivered at nursing care home level) or control. Three participant groups will be recruited: residents with advanced dementia, informal carers of a participating resident and nursing care home staff. Data will be collected for 6 months. Feasibility objectives concern the recruitment and s ling of nursing homes, residents, informal carers and staff the selection and timing of primary (quality of dying and quality of life) and secondary clinical outcome measures (person centredness, symptom presence, agitation, quality of life, resource use and costs and residents’ activity monitored using actigraphy). Acceptability, fidelity and sustainability of the intervention will be assessed using semistructured interviews with staff and informal carers. This protocol has been approved by NHS Wales Research Ethics Committee 5 (ref: 17/WA0378). Dissemination plans include working with a public involvement panel, through a website ( www.namastetrial.org.uk ), social media, academic and practice conferences and via peer reviewed publications. ISRCTN14948133 Pre-results.
Publisher: Mark Allen Group
Date: 02-03-2017
Publisher: National Institute for Health and Care Research
Date: 02-2016
DOI: 10.3310/HSDR04080
Abstract: Among people living with dementia (PLWD) there is a high prevalence of comorbid medical conditions but little is known about the effects of comorbidity on processes and quality of care and patient needs or how services are adapting to address the particular needs of this population. To explore the impact of dementia on access to non-dementia services and identify ways of improving the integration of services for this population. We undertook a scoping review, cross-sectional analysis of a population cohort database, interviews with PLWD and comorbidity and their family carers and focus groups or interviews with health-care professionals (HCPs). We focused specifically on three conditions: diabetes, stroke and vision impairment (VI). The analysis was informed by theories of continuity of care and access to care. The study included 28 community-dwelling PLWD with one of our target comorbidities, 33 family carers and 56 HCPs specialising in diabetes, stroke, VI or primary care. The scoping review ( n = 76 studies or reports) found a lack of continuity in health-care systems for PLWD and comorbidity, with little integration or communication between different teams and specialities. PLWD had poorer access to services than those without dementia. Analysis of a population cohort database found that 17% of PLWD had diabetes, 18% had had a stroke and 17% had some form of VI. There has been an increase in the use of unpaid care for PLWD and comorbidity over the last decade. Our qualitative data supported the findings of the scoping review: communication was often poor, with an absence of a standardised approach to sharing information about a person’s dementia and how it might affect the management of other conditions. Although HCPs acknowledged the vital role that family carers play in managing health-care conditions of PLWD and facilitating continuity and access to care, this recognition did not translate into their routine involvement in appointments or decision-making about their family member. Although we found ex les of good practice, these tended to be about the behaviour of in idual practitioners rather than system-based approaches current systems may unintentionally block access to care for PLWD. Pathways and guidelines for our three target conditions do not address the possibility of a dementia diagnosis or provide decision-making support for practitioners trying to weigh up the risks and benefits of treatment for PLWD. Significant numbers of PLWD have comorbid conditions such as stroke, diabetes and VI. The presence of dementia complicates the delivery of health and social care and magnifies the difficulties that people with long-term conditions experience. Key elements of good care for PLWD and comorbidity include having the PLWD and family carer at the centre, flexibility around processes and good communication which ensures that all services are aware when someone has a diagnosis of dementia. The impact of a diagnosis of dementia on pre-existing conditions should be incorporated into guidelines and care planning. Future work needs to focus on the development and evaluation of interventions to improve continuity of care and access to services for PLWD with comorbidity. The National Institute for Health Research Health Services and Delivery Research programme.
Publisher: National Institute for Health and Care Research
Date: 08-2018
DOI: 10.3310/HSDR06280
Abstract: Health-care systems are increasingly moving towards more integrated approaches. Shared decision-making (SDM) is central to these models but may be complicated by the need to negotiate and communicate decisions between multiple providers, as well as patients and their family carers this is particularly the case for older people with complex needs. To provide a context-relevant understanding of how models to facilitate SDM might work for older people with multiple health and care needs and how they might be applied to integrated care models. Realist synthesis following Realist and Meta-narrative Evidence Syntheses: Evolving Standards (RAMESES) publication standards. Twenty-four stakeholders took part in interviews. Electronic databases including MEDLINE (via PubMed), The Cochrane Library, Scopus, Google and Google Scholar (Google Inc., Mountain View, CA, USA). Lateral searches were also carried out. All types of evidence were included. Iterative stakeholder-driven, three-stage approach, involving (1) scoping of the literature and stakeholder interviews ( n = 13) to develop initial programme theory/ies, (2) systematic searches for evidence to test and develop the theories and (3) validation of programme theory/ies with stakeholders ( n = 11). We included 88 papers, of which 29 focused on older people or people with complex needs. We identified four theories (context–mechanism–outcome configurations) that together provide an account of what needs to be in place for SDM to work for older people with complex needs: understanding and assessing patient and carer values and capacity to access and use care organising systems to support and prioritise SDM supporting and preparing patients and family carers to engage in SDM and a person-centred culture of which SDM is a part. Programmes likely to be successful in promoting SDM are those that create trust between those involved, allow service users to feel that they are respected and understood, and engender confidence to engage in SDM. There is a lack of evidence on interventions to promote SDM in older people with complex needs or on interprofessional approaches to SDM. Models of SDM for older people with complex health and care needs should be conceptualised as a series of conversations that patients, and their family carers, may have with a variety of different health and care professionals. To embed SDM in practice requires a shift from a biomedical focus to a more person-centred ethos. Service providers are likely to need support, both in terms of the way services are organised and delivered and in terms of their own continuing professional development. Older people with complex needs may need support to engage in SDM. How this support is best provided needs further exploration, although face-to-face interactions and ongoing patient–professional relationships are key. There is a need for further work to establish how organisational structures can be better aligned to meet the requirements of older people with complex needs. This includes a need to define and evaluate the contribution that different members of health and care teams can make to SDM for older people with complex health and care needs. This study is registered as PROSPERO CRD42016039013. The National Institute for Health Research Health Services and Delivery Research programme.
Publisher: BMJ
Date: 07-2017
Publisher: BMJ
Date: 02-2017
Publisher: National Institute for Health and Care Research
Date: 08-2017
DOI: 10.3310/HTA21420
Abstract: Eighty per cent of care home residents in the UK are living with dementia. The prevalence of faecal incontinence (FI) in care homes is estimated to range from 30% to 50%. There is limited evidence of what is effective in the reduction and management of FI in care homes. To provide a theory-driven explanation of the effectiveness of programmes that aim to improve FI in people with advanced dementia in care homes. A realist synthesis. This was an iterative approach that involved scoping of the literature and consultation with five stakeholder groups, a systematic search and analysis of published and unpublished evidence, and a validation of programme theories with relevant stakeholders. The databases searched included PubMed, Cumulative Index to Nursing and Allied Health Literature, The Cochrane Library, Scopus, SocAbs, Applied Social Sciences Index and Abstracts, BiblioMap, Sirius, OpenGrey, Social Care Online and the National Research Register. The scoping identified six programme theories with related context–mechanism–outcome configurations for testing. These addressed (1) clinician-led support, assessment and review, (2) the contribution of teaching and support for care home staff on how to reduce and manage FI, (3) the causes and prevention of constipation, (4) how the cognitive and physical capacity of the resident affect outcomes, (5) how the potential for recovery, reduction and management of FI is understood by those involved and (6) how the care of people living with dementia and FI is integral to the work patterns of the care home and its staff. Data extraction was completed on 62 core papers with iterative searches of linked literature. Dementia was a known risk factor for FI, but its affect on the uptake of different interventions and the dementia-specific continence and toileting skills staff required was not addressed. Most care home residents with FI will be doubly incontinent and, therefore, there is limited value in focusing solely on FI or on single causes of FI such as constipation. Clinical assessment, knowledge of the causes of FI and strategies that recognise the in iduals’ preferences are necessary contextual factors. Valuing the intimate and personal care work that care home staff provide to people living with dementia and addressing the dementia-related challenges when providing continence care within the daily work routines are key to helping to reduce and manage FI in this population. The synthesis was constrained by limited evidence specific to FI and people with dementia in care homes and by the lack of dementia-specific evidence on continence aids. This realist synthesis provides a theory-driven understanding of the conditions under which improvement in care for care home residents living with dementia and FI is likely to be successful. Future multicomponent interventions need to take account of how the presence of dementia affects the behaviours and choices of those delivering and receiving continence care within a care home environment. This study is registered as PROSPERO CRD42014009902. The National Institute for Health Research Health Technology Assessment programme.
Publisher: Springer Science and Business Media LLC
Date: 12-2018
Publisher: Wiley
Date: 09-11-2011
Publisher: SAGE Publications
Date: 06-05-2019
Abstract: The European Association for Palliative Care White Paper defined optimal palliative care in dementia based on evidence and expert consensus. Yet, we know little on how to achieve this for people with dementia living and dying at home. To examine evidence on home palliative care interventions in dementia, in terms of their effectiveness on end-of-life care outcomes, factors influencing implementation, the extent to which they address the European Association for Palliative Care palliative care domains and evidence gaps. A systematic review of home palliative care interventions in dementia. The review adhered to the PRISMA guidelines and the protocol was registered with PROSPERO (CRD42018093607). We searched four electronic databases up to April 2018 (PubMed, Scopus, Cochrane library and CINAHL) and conducted lateral searches. We retrieved eight relevant studies, none of which was of high quality. The evidence, albeit of generally weak quality, showed the potential benefits of the interventions in improving end-of-life care outcomes, for ex le, behavioural disturbances. The interventions most commonly focused on optimal symptom management, continuity of care and psychosocial support. Other European Association for Palliative Care domains identified as important in palliative care for people with dementia, for ex le, prognostication of dying or avoidance of burdensome interventions were under-reported. No direct evidence on facilitators and barriers to implementation was found. The review highlights the paucity of high-quality dementia-specific research in this area and recommends key areas for future work, for ex le, the need for process evaluation to identify facilitators and barriers to implementing interventions.
Publisher: National Institute for Health and Care Research
Date: 05-2017
DOI: 10.3310/HTA21260
Abstract: There is currently no disease-modifying treatment available to halt or delay the progression of the disease pathology in dementia. An agreed core set of the best-available and most appropriate outcomes for disease modification would facilitate the design of trials and ensure consistency across disease modification trials, as well as making results comparable and meta-analysable in future trials. To agree a set of core outcomes for disease modification trials for mild to moderate dementia with the UK dementia research community and patient and public involvement (PPI). We included disease modification trials with quantitative outcomes of efficacy from (1) references from related systematic reviews in workstream 1 (2) searches of the Cochrane Dementia and Cognitive Improvement Group study register, Cochrane Central Register of Controlled Trials, Cumulative Index to Nursing and Allied Health Literature, EMBASE, Latin American and Caribbean Health Sciences Literature and PsycINFO on 11 December 2015, and clinical trial registries [International Standard Randomised Controlled Trial Number (ISRCTN) and clinicaltrials.gov] on 22 and 29 January 2016 and (3) hand-searches of reference lists of relevant systematic reviews from database searches. The project consisted of four workstreams. (1) We obtained related core outcome sets and work from co-applicants. (2) We systematically reviewed published and ongoing disease modification trials to identify the outcomes used in different domains. We extracted outcomes used in each trial, recording how many used each outcome and with how many participants. We ided outcomes into the domains measured and searched for validation data. (3) We consulted with PPI participants about recommended outcomes. (4) We presented all the synthesised information at a conference attended by the wider body of National Institute for Health Research (NIHR) dementia researchers to reach consensus on a core set of outcomes. We included 149 papers from the 22,918 papers screened, referring to 125 in idual trials. Eighty-one outcomes were used across trials, including 72 scales [31 cognitive, 12 activities of daily living (ADLs), 10 global, 16 neuropsychiatric and three quality of life] and nine biological techniques. We consulted with 18 people for PPI. The conference decided that only cognition and biological markers are core measures of disease modification. Cognition should be measured by the Mini Mental State Examination (MMSE) or the Alzheimer’s Disease Assessment Scale – Cognitive subscale (ADAS-Cog), and brain changes through structural magnetic resonance imaging (MRI) in a subset of participants. All other domains are important but not core. We recommend using the Neuropsychiatric Inventory for neuropsychiatric symptoms: the Disability Assessment for Dementia for ADLs, the Dementia Quality of Life Measure for quality of life and the Clinical Dementia Rating scale to measure dementia globally. Most of the trials included participants with Alzheimer’s disease, so recommendations may not apply to other types of dementia. We did not conduct economic analyses. The PPI consultation was limited to members of the Alzheimer’s Society Research Network. Cognitive outcomes and biological markers form the core outcome set for future disease modification trials, measured by the MMSE or ADAS-Cog, and structural MRI in a subset of participants. We envisage that the core set may be superseded in the future, particularly for other types of dementia. There is a need to develop an algorithm to compare scores on the MMSE and ADAS-Cog. The project was registered with Core Outcome Measures in Effectiveness Trials [ tudies/details/819?result=true (accessed 7 April 2016)]. The systematic review protocol is registered as PROSPERO CRD42015027346. The National Institute for Health Research Health Technology Assessment programme.
Publisher: LSE Press
Date: 22-10-2020
DOI: 10.31389/JLTC.43
Publisher: Public Library of Science (PLoS)
Date: 30-10-2012
Publisher: MDPI AG
Date: 05-02-2020
Abstract: Organisational context is known to impact on the successful implementation of healthcare initiatives in care homes. We undertook a systematic mapping review to examine whether researchers have considered organisational context when planning, conducting, and reporting the implementation of healthcare innovations in care homes. Review data were mapped against the Alberta Context Tool, which was designed to assess organizational context in care homes. The review included 56 papers. No studies involved a systematic assessment of organisational context prior to implementation, but many provided post hoc explanations of how organisational context affected the success or otherwise of the innovation. Factors identified to explain a lack of success included poor senior staff engagement, non-alignment with care home culture, limited staff capacity to engage, and low levels of participation from health professionals such as general practitioners (GPs). Thirty-five stakeholders participated in workshops to discuss findings and develop questions for assessing care home readiness to participate in innovations. Ten questions were developed to initiate conversations between innovators and care home staff to support research and implementation. This framework can help researchers initiate discussions about health-related innovation. This will begin to address the gap between implementation theory and practice.
Publisher: Hindawi Limited
Date: 16-02-2015
DOI: 10.1111/HSC.12189
Abstract: Specialist nurses are one way of providing support for family carers of people with dementia, but relatively little is known about what these roles achieve, or if they are more effective than roles that do not require a clinical qualification. The aim of this review was to synthesise the literature on the scope and effectiveness of specialist nurses, known as Admiral Nurses, and set this evidence in the context of other community-based initiatives to support family carers of people with dementia. We undertook a systematic review of the literature relating to the scope and effectiveness of Admiral Nurses and a review of reviews of interventions to support the family carers of people with dementia. To identify studies, we searched electronic databases, undertook lateral searches and contacted experts. Searches were undertaken in November 2012. Results are reported narratively with key themes relating to Admiral Nurses identified using thematic synthesis. We included 33 items relating to Admiral Nurses (10 classified as research) and 11 reviews evaluating community-based support for carers of people with dementia. There has been little work to evaluate specific interventions provided by Admiral Nurses, but three overarching thematic categories were identified: (i) relational support, (ii) co-ordinating and personalising support and (iii) challenges and threats to the provision of services by Admiral Nurses. There was an absence of clearly articulated goals and service delivery was subject to needs of the host organisation and the local area. The reviews of community-based support for carers of people with dementia included 155 studies but, in general, evidence that interventions reduced caregiver depression or burden was weak, although psychosocial and educational interventions may reduce depression in carers. Community support for carers of people with dementia, such as that provided by Admiral Nurses, is valued by family carers, but the impact of such initiatives is not clearly established.
Publisher: Cambridge University Press (CUP)
Date: 05-2008
DOI: 10.1017/S0144686X07006861
Abstract: The prevention of falls is currently high on the health policy agenda in the United Kingdom, which has led to the establishment of many falls-prevention services. If these are to be effective, however, the acceptability of services to older people needs to be considered. This paper reports a systematic review of studies of older people's perceptions of these interventions. The papers for review were identified by searching electronic databases, checking reference lists, and contacting experts. Two authors independently screened the studies and extracted data on the factors relating to participation in, or adherence to, falls-prevention strategies. Twenty-four studies were identified, of which 12 were qualitative. Only one study specifically examined interventions that promote participation in falls-prevention programmes the others explored older people's attitudes and views. The factors that facilitated participation included social support, low intensity exercise, greater education, involvement in decision-making, and a perception of the programmes as relevant and life-enhancing. Barriers to participation included fatalism, denial and under-estimation of the risk of falling, poor self-efficacy, no previous history of exercise, fear of falling, poor health and functional ability, low health expectations and the stigma associated with programmes that targeted older people.
Publisher: BMJ
Date: 11-2016
Publisher: BMJ
Date: 03-2018
DOI: 10.1136/BMJOPEN-2017-020521
Abstract: In 2012–2013, the English National Health Service mandated hospitals to conduct systematic case-finding of people with dementia among older people with unplanned admissions. The method was not defined. The aim of this study was to understand current approaches to dementia case-finding in acute hospitals in England and explore the views of healthcare professionals on perceived benefits and challenges. Qualitative study involving interviews, focus groups and thematic content analysis. Primary care and secondary care across six counties in the East of England. Hospital staff involved in dementia case-finding and primary care staff in the catchment areas of those hospitals. We recruited 23 hospital staff and 36 primary care staff, including 30 general practitioners (GPs). Analysis resulted in three themes: (1) lack of consistent approaches in case-finding processes, (2) barriers between primary care and secondary care which impact on case-finding outcomes and (3) perceptions of rationale, aims and impacts of case-finding. The study shows that there were variations in how well hospitals recorded and reported outcomes to GPs. Barriers between primary care and secondary care, including GPs’ lack of access to hospital investigations and lack of clarity about roles and responsibilities, impacted case-finding outcomes. Staff in secondary care were more positive about the initiative than primary care staff, and there were conflicting priorities for primary care and secondary care regarding case-finding. The study suggests a more evidence-based approach was needed to justify approaches to dementia case-finding. Information communicated to primary care from hospitals needs to be comprehensive, appropriate and consistent before GPs can effectively plan further investigation, treatment or care. Follow-up in primary care further requires access to options for postdiagnostic support. There is a need to evaluate the outcomes for patients and the economic impact on health and care services across settings.
Publisher: Springer Science and Business Media LLC
Date: 24-07-2018
Publisher: Wiley
Date: 28-11-2013
DOI: 10.1111/HEX.12162
Publisher: RCN Publishing Ltd.
Date: 02-09-2015
Abstract: Many people with dementia have other complex health needs, including comorbidity and frailty. Most models of care focus on single diseases and do not take into account the needs of those with comorbidities and dementia. Integration, continuity of care and personalisation are particularly important for this vulnerable group. It is also important to recognise potential barriers to accessing care so that these can be addressed. Issues around providing health care for people with dementia and complex health needs are considered in this article, including management and organisation of care, access to care, models of care, role of the family carer, and prevention of dementia, frailty and long-term conditions.
Publisher: Springer Science and Business Media LLC
Date: 21-10-2019
DOI: 10.1186/S12877-019-1275-Z
Abstract: Some interventions are developed from practice, and implemented before evidence of effect is determined, or the intervention is fully specified. An ex le is Namaste Care, a multi-component intervention for people with advanced dementia, delivered in care home, community, hospital and hospice settings. This paper describes the development of an intervention description, guide and training package to support implementation of Namaste Care within the context of a feasibility trial. This allows fidelity to be determined within the trial, and for intervention users to understand how similar their implementation is to that which was studied. A four-stage approach: a) Collating existing intervention materials and drawing from programme theory developed from a realist review to draft an intervention description. b) Exploring readability, comprehensibility and utility with staff who had not experienced Namaste Care. c) Using modified nominal group techniques with those with Namaste Care experience to refine and prioritise the intervention implementation materials. d) Final refinement with a patient and public involvement panel. Eighteen nursing care home staff, one carer, one volunteer and five members of our public involvement panel were involved across the study steps. A 16-page A4 booklet was designed, with flow charts, graphics and colour coded information to ease navigation through the document. This was supplemented by infographics, and a training package. The guide describes the boundaries of the intervention and how to implement it, whilst retaining the flexible spirit of the Namaste Care intervention. There is little attention paid to how best to specify complex interventions that have already been organically implemented in practice. This four-stage process may have utility for context specific adaptation or description of existing, but untested, interventions. A robust, agreed, intervention and implementation description should enable a high-quality future trial. If an effect is determined, flexible practice implementation should be enabled through having a clear, evidence-based guide.
Publisher: Hindawi Limited
Date: 14-08-2012
DOI: 10.1111/J.1365-2524.2012.01067.X
Abstract: Health and social care policy in the UK advocates inter-professional working (IPW) to support older people with complex and multiple needs. Whilst there is a growing understanding of what supports IPW, there is a lack of evidence linking IPW to explicit outcomes for older people living in the community. This review aimed to identify the models of IPW that provide the strongest evidence base for practice with community dwelling older people. We searched electronic databases from 1 January 1990-31 March 2008. In December 2010 we updated the findings from relevant systematic reviews identified since 2008. We selected papers describing interventions that involved IPW for community dwelling older people and randomised controlled trials (RCT) reporting user-relevant outcomes. Included studies were classified by IPW models (Case Management, Collaboration and Integrated Team) and assessed for risk of bias. We conducted a narrative synthesis of the evidence according to the type of care (interventions delivering acute, chronic, palliative and preventive care) identified within each model of IPW. We retrieved 3211 records and included 37 RCTs which were mapped onto the IPW models: Overall, there is weak evidence of effectiveness and cost-effectiveness for IPW, although well-integrated and shared care models improved processes of care and have the potential to reduce hospital or nursing/care home use. Study quality varied considerably and high quality evaluations as well as observational studies are needed to identify the key components of effective IPW in relation to user-defined outcomes. Differences in local contexts raise questions about the applicability of the findings and their implications for practice. We need more information on the outcomes of the process of IPW and evaluations of the effectiveness of different configurations of health and social care professionals for the care of community dwelling older people.
Publisher: BMJ
Date: 2017
Publisher: SAGE Publications
Date: 08-08-2019
Abstract: This article outlines how a realist evaluation of dementia care in hospitals used non-participant observation to support the refinement and testing of mechanisms likely to lead to the use of person-centred care. We found that comments and explanations of their actions from hospital staff during observation periods provided insights into the reasoning that generated their actions for care in real time. This informed subsequent data collection and analysis. Two worked ex les of mechanisms first identified during non-participant observation demonstrate (1) how they were uncovered, and (2) how this informed research activities for theory refinement. Early, iterative engagement with the analytic process, primarily involving reflection and debate with the research team, maximised the potential of observation data to support surfacing underlying mechanisms, linking them to specific contexts and outcomes.
Publisher: NHS England
Date: 2017
DOI: 10.18745/PB.18200
Publisher: National Institute for Health and Care Research
Date: 2020
DOI: 10.3310/HTA24060
Abstract: People with advanced dementia who live and die in nursing homes experience variable quality of life, care and dying. There is a need to identify appropriate, cost-effective interventions that facilitate high-quality end-of-life care provision. To establish the feasibility and acceptability to staff and family of conducting a cluster randomised controlled trial of the Namaste Care intervention for people with advanced dementia in nursing homes. The study had three phases: (1) realist review and (2) intervention refinement to inform the design of (3) a feasibility cluster randomised controlled trial with a process evaluation and economic analysis. Clusters (nursing homes) were randomised in a 3 : 1 ratio to intervention or control (usual care). The nature of the intervention meant that blinding was not possible. Nursing homes in England providing care for people with dementia. Residents with advanced dementia (assessed as having a Functional Assessment Staging Test score of 6 or 7), their informal carers and nursing home staff. Namaste Care is a complex group intervention that provides structured personalised care in a dedicated space, focusing on enhancements to the physical environment, comfort management and sensory engagement. The two contender primary outcome measures were Comfort Assessment in Dying – End of Life Care in Dementia for quality of dying (dementia) and Quality of Life in Late Stage Dementia for quality of life. The secondary outcomes were as follows: person with dementia, sleep/activity (actigraphy), neuropsychiatric symptoms, agitation and pain informal carers, satisfaction with care at the end of life staff members, person-centred care assessment, satisfaction with care at the end of life and readiness for change and other data – health economic outcomes, medication/service use and intervention activity. Phase 1 (realist review 86 papers) identified that a key intervention component was the activities enabling the development of moments of connection. In phase 2, refinement of the intervention enabled the production of a user-friendly 16-page A4 booklet. In phase 3, eight nursing homes were recruited. Two homes withdrew before the intervention commenced four intervention and two control homes completed the study. Residents with advanced dementia ( n = 32) were recruited in intervention ( n = 18) and control ( n = 14) homes. Informal carers (total, n = 12: intervention, n = 5 control, n = 7) and 97 staff from eight sites (intervention, n = 75 control, n = 22) were recruited over a 6-month period. Recruitment is feasible. Completion rates of the primary outcome questionnaires were high at baseline (100%) and at 4 weeks (96.8%). The Quality of Life in Late Stage Dementia was more responsive to change over 24 weeks. Even where economic data were missing, these could be collected in a full trial. The intervention was acceptable the dose varied depending on the staffing and physical environment of each care home. Staff and informal carers reported changes for the person with dementia in two ways: increased social engagement and greater calm. No adverse events related to the intervention were reported. A subsequent definitive trial is feasible if there are amendments to the recruitment process, outcome measure choice and intervention specification. In a full trial, consideration is needed of the appropriate outcome measure that is sensitive to different participant responses, and of clear implementation principles for this person-centred intervention in a nursing home context. Current Controlled Trials ISRCTN14948133. This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment Vol. 24, No. 6. See the NIHR Journals Library website for further project information.
Publisher: Elsevier BV
Date: 07-2020
Publisher: Springer Science and Business Media LLC
Date: 24-11-2011
Abstract: In the UK there are almost three times as many beds in care homes as in National Health Service (NHS) hospitals. Care homes rely on primary health care for access to medical care and specialist services. Repeated policy documents and government reviews register concern about how health care works with independent providers, and the need to increase the equity, continuity and quality of medical care for care homes. Despite multiple initiatives, it is not known if some approaches to service delivery are more effective in promoting integrated working between the NHS and care homes. This study aims to evaluate the different integrated approaches to health care services supporting older people in care homes, and identify barriers and facilitators to integrated working. A systematic review was conducted using Medline (PubMed), CINAHL, BNI, EMBASE, PsycInfo, DH Data, Kings Fund, Web of Science (WoS incl. SCI, SSCI, HCI) and the Cochrane Library incl. DARE. Studies were included if they evaluated the effectiveness of integrated working between primary health care professionals and care homes, or identified barriers and facilitators to integrated working. Studies were quality assessed data was extracted on health, service use, cost and process related outcomes. A modified narrative synthesis approach was used to compare and contrast integration using the principles of framework analysis. Seventeen studies were included 10 quantitative studies, two process evaluations, one mixed methods study and four qualitative. The majority were carried out in nursing homes. They were characterised by heterogeneity of topic, interventions, methodology and outcomes. Most quantitative studies reported limited effects of the intervention there was insufficient information to evaluate cost. Facilitators to integrated working included care home managers' support and protected time for staff training. Studies with the potential for integrated working were longer in duration. Despite evidence about what inhibits and facilitates integrated working there was limited evidence about what the outcomes of different approaches to integrated care between health service and care homes might be. The majority of studies only achieved integrated working at the patient level of care and the focus on health service defined problems and outcome measures did not incorporate the priorities of residents or acknowledge the skills of care home staff. There is a need for more research to understand how integrated working is achieved and to test the effect of different approaches on cost, staff satisfaction and resident outcomes.
Publisher: BMJ
Date: 06-2018
Publisher: Elsevier BV
Date: 08-2019
DOI: 10.1016/J.IJNURSTU.2018.10.004
Abstract: There are an increasing number of interventions to improve hospital care for patients with dementia. Evidence for their impact on staff actions and patient outcomes is, however, limited and context dependent. To explain the factors that support hospital staff to provide dementia sensitive care and with what outcomes for patients with dementia. A realist evaluation using a two-site case study approach. Two hospital trusts in the East of England. Site 1 had a ward for patients with dementia that would address their medical and mental health needs. Site 2 used a team of healthcare assistants, who had support from dementia specialist nurses, to work with patients with dementia across the hospital. Hospital staff who had a responsibility for inpatients with dementia (healthcare assistants, nurses, medical staff, allied healthcare professionals and support staff) (n = 36), patients with dementia (n = 28), and family carers of patients with dementia (n = 2). A three stage realist evaluation: 1) building the programme theory of what works and when 2) testing the programme theory through empirical data (80 h non-participant observation, 42 interviews, 28 patient medical notes, 27 neuropsychiatric inventory, and documentary review) 3) synthesis and verification of findings with key stakeholders. The programme theory comprised six interconnected context-mechanism-outcome configurations: 1) knowledge and authority to respond to an unmet need 2) role relevant training and opportunities for reflection 3) clinical experts and senior staff promoting practices that are patient-focused 4) engaging with opportunities to spend time with patients 5) risk management as an opportunity for person-centred care 6) valuing dementia care as skilled work. Effective interactions reduced patient distress and supported patient orientation. Training and allocation of staff time were of themselves insufficient to ensure dementia care was prioritised and valued as skilled work. Staff concerns about the consequences of adverse incidents and work pressures on the ward, even with support, took precedence and influenced the quality of their interactions with patients with dementia. A key finding linked to staff retention and developing capacity in the workforce to provide expert dementia care was that despite extra training and organisational endorsement, nursing staff did not regard dementia care as skilled nursing work. There is increased awareness and organisational commitment to dementia-friendly healthcare in general hospitals. However, in addition to training and adapting the environment to the patient, further work is needed to make explicit the specialist skills required for effective dementia care.
Publisher: Informa UK Limited
Date: 16-06-2201
DOI: 10.1080/13607863.2017.1334038
Abstract: Literature agrees that post-diagnostic services for people living with young onset dementia (YOD) need to be age-appropriate, but there is insufficient evidence of 'what works' to inform service design and delivery. To provide an evidence base of age-appropriate services and to review the perceived effectiveness of current interventions. We undertook a systematic review including all types of research relating to interventions for YOD. We searched PubMed, CINHAL Plus, SCOPUS, EBSCO Host EJS, Social Care Online and Google Scholar, hand-searched journals and carried out lateral searches (July-October 2016). Included papers were synthesised qualitatively. Primary studies were critically appraised. Twenty articles (peer-reviewed [n = 10], descriptive accounts [n = 10]) discussing 195 participants (persons diagnosed with YOD [n = 94], caregivers [n = 91] and other [n = 10]) were identified for inclusion. Services enabled people with YOD to remain living at home for longer. However, service continuity was compromised by short-term project-based commissioning and ad-hoc service delivery. The evidence on the experience of living with YOD is not matched by research and the innovation needed to mitigate the impact of YOD. The inclusion of people with YOD and their caregivers in service design is critical when planning support in order to delay institutional care.
Publisher: National Institute for Health and Care Research
Date: 12-2017
DOI: 10.3310/HTA21750
Abstract: Dementia and diabetes mellitus are common long-term conditions that coexist in a large number of older people. People living with dementia and diabetes may be at increased risk of complications such as hypoglycaemic episodes because they are less able to manage their diabetes. To identify the key features or mechanisms of programmes that aim to improve the management of diabetes in people with dementia and to identify areas needing further research. Realist review, using an iterative, stakeholder-driven, four-stage approach. This involved scoping the literature and conducting stakeholder interviews to develop initial programme theories, systematic searches of the evidence to test and develop the theories, and the validation of programme theories with a purposive s le of stakeholders. Twenty-six stakeholders (user atient representatives, dementia care providers, clinicians specialising in dementia or diabetes and researchers) took part in interviews and 24 participated in a consensus conference. The following databases were searched from 1990 to March 2016: MEDLINE (PubMed), Cumulative Index to Nursing and Allied Health Literature, Scopus, The Cochrane Library (including the Cochrane Database of Systematic Reviews), Database of Abstracts of Reviews of Effects, the Health Technology Assessment (HTA) database, NHS Economic Evaluation Database, AgeInfo (Centre for Policy on Ageing – UK), Social Care Online, the National Institute for Health Research (NIHR) portfolio database, NHS Evidence, Google (Google Inc., Mountain View, CA, USA) and Google Scholar (Google Inc., Mountain View, CA, USA). We included 89 papers. Ten papers focused directly on people living with dementia and diabetes, and the rest related to people with dementia or diabetes or other long-term conditions. We identified six context–mechanism–outcome (CMO) configurations that provide an explanatory account of how interventions might work to improve the management of diabetes in people living with dementia. This includes embedding positive attitudes towards people living with dementia, person-centred approaches to care planning, developing skills to provide tailored and flexible care, regular contact, family engagement and usability of assistive devices. A general metamechanism that emerges concerns the synergy between an intervention strategy, the dementia trajectory and social and environmental factors, especially family involvement. A flexible service model for people with dementia and diabetes would enable this synergy in a way that would lead to the improved management of diabetes in people living with dementia. There is little evidence relating to the management of diabetes in people living with dementia, although including a wider literature provided opportunities for transferable learning. The outcomes in our CMOs are largely experiential rather than clinical. This reflects the evidence available. Outcomes such as increased engagement in self-management are potential surrogates for better clinical management of diabetes, but this is not proven. This review suggests that there is a need to prioritise quality of life, independence and patient and carer priorities over a more biomedical, target-driven approach. Much current research, particularly that specific to people living with dementia and diabetes, identifies deficiencies in, and problems with, current systems. Although we have highlighted the need for personalised care, continuity and family-centred approaches, there is much evidence to suggest that this is not currently happening. Future research on the management of diabetes in older people with complex health needs, including those with dementia, needs to look at how organisational structures and workforce development can be better aligned to the needs of people living with dementia and diabetes. This study is registered as PROSPERO CRD42015020625. The NIHR HTA programme.
Publisher: BMJ
Date: 06-2019
DOI: 10.1136/BMJOPEN-2018-026927
Abstract: Between 2012 and 2017 dementia case finding was routinely carried out on people aged 75 years and over with unplanned admissions to acute hospitals across England. The assumption was that this would lead to better planning of care and treatment for patients with dementia following discharge from hospital. However, little is known about the experiences of patients and carers or the impacts on other health services. This study explored the impact of dementia case finding on older people and their families and on their use of services. Thematic content analysis was conducted on qualitative interview data and costs associated with service use were estimated. Measures included the Mini-Mental State Examination, the EuroQol quality of life scale and a modified Client Service Receipt Inventory. Four counties in the East of England. People aged ≥75 years who had been identified by case finding during an unplanned hospital admission as warranting further investigation of possible dementia and their family carers. We carried out 28 interviews, including 19 joint patient-carer(s), 5 patient only and 4 family carer interviews. Most patients and carers were unaware that memory assessments had taken place, with many families not being informed or involved in the process. Participants had a variety of views on memory testing in hospital and had concerns about how hospitals carried out assessments and communicated results. Overall, case finding did not lead to general practitioner (GP) follow-up after discharge home or lead to referral for further investigation. Few services were initiated because of dementia case finding in hospital. This study shows that dementia case finding may not lead to increased GP follow-up or service provision for patients after discharge from hospital. There is a need for a more evidence-based approach to the initiation of mandatory initiatives such as case finding that inevitably consume stretched human and financial resources.
Publisher: Public Library of Science (PLoS)
Date: 29-06-2017
Publisher: SAGE Publications
Date: 04-02-2020
Abstract: People with dementia requiring palliative care have multiple needs, which are lified in long-term care settings. The European Association for Palliative Care White Paper offers recommendations for optimal palliative care in dementia integral for this population, providing useful guidance to inform interventions addressing their specific needs. The aim of this study is to describe the components of palliative care interventions for people with dementia in long-term care focusing on shared decision-making and examine their alignment to the European Association for Palliative Care domains of care. Systematic review with narrative synthesis (PROSPERO ID: CRD42018095649). Four databases (MEDLINE, CINAHL, PsycINFO and CENTRAL) were searched (earliest records – July 2019) for peer-reviewed articles and protocols in English, reporting on palliative care interventions for people with dementia in long-term care, addressing European Association for Palliative Care Domains 2 (person-centred) or 3 (setting care goals) and ⩾1 other domain. Fifty-one papers were included, reporting on 32 studies. For each domain (1–10), there were interventions found aiming to address its goal, although no single intervention addressed all domains. Domain 7 (symptom management n = 19), 6 (avoiding overly aggressive treatment n = 18) and 10 (education n = 17) were the most commonly addressed Domain 5 (prognostication n = 7) and 4 (continuity of care n = 2) were the least addressed. Almost all domains were addressed across all interventions currently offered for this population to various degrees, but not within a singular intervention. Future research optimally needs to be theory driven when developing dementia-specific interventions at the end of life, with the European Association for Palliative Care domains serving as a foundation to inform the best care for this population.
Location: United Kingdom of Great Britain and Northern Ireland
Location: United Kingdom of Great Britain and Northern Ireland
Location: United Kingdom of Great Britain and Northern Ireland
No related grants have been discovered for Frances Bunn.