BackgroundHealth 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; particularly for older people with complex needs. The aim of this review was to provide a context relevant understanding of how interventions to facilitate SDM might work for older people with multiple health and care needs, and how they might be applied in integrated care models.MethodsIterative, stakeholder driven, realist synthesis following RAMESES publication standards. It involved: 1) scoping 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 searched PubMed, The Cochrane Library, Scopus, Google, Google Scholar, and undertook lateral searches. All types of evidence were included.ResultsWe included 88 papers; 29 focused on older people or people with complex needs. We identified four 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. This includes: 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 allow older people to feel that they are respected and understood, and that engender confidence to engage in SDM.ConclusionsTo embed SDM in practice requires a radical shift from a biomedical focus to a more person-centred ethos. Service providers will need support to change their professional behaviour and to better organise and deliver services. Face to face interactions, permission and space to discuss options, and continuity of patient-professional relationships are key in supporting older people with complex needs to engage in SDM. Future research needs to focus on inter-professional approaches to SDM and how families and carers are involved.Electronic supplementary materialThe online version of this article (10.1186/s12877-018-0853-9) contains supplementary material, which is available to authorized users.

The prevalence of fecal 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. Using realist synthesis, 6 potential program theories of what should work were identified. These addressed clinician-led support, assessment, and review; the contribution of teaching and support for care home staff on how to reduce and manage FI; addressing the causes and prevention of constipation; how cognitive and physical capacity of the resident affects outcomes; how the potential for recovery, reduction, and management of FI is understood by those involved; and how the care of people living with dementia and FI is integral to the work patterns of the care home and its staff. Dementia was a known risk factor for fecal incontinence (FI), but how it affected uptake of different interventions or the dementia specific continence and toileting skills staff require, were not addressed in the literature. There was a lack of dementia-specific evidence on continence aids. Most care home residents with FI will be doubly incontinent; there is, therefore, limited value in focusing solely on FI or single causes, such as constipation. Medical and nursing support for continence care is an important resource, but it is unhelpful to create a distinction between what is continence care and what is personal or intimate care. Prompted toileting is an approach that may be particularly beneficial for some residents. Valuing the intimate and personal care work unqualified and junior staff provide to people living with dementia and reinforcement of good practice in ways that are meaningful to this workforce are important clinician-led activities. Providing dementia-sensitive continence care within the daily work routines of care homes is key to helping to reduce and manage FI for this population.

BackgroundDementia 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.ObjectivesTo 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.DesignRealist 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 sample of stakeholders.ParticipantsTwenty-six stakeholders (user/patient representatives, dementia care providers, clinicians specialising in dementia or diabetes and researchers) took part in interviews and 24 participated in a consensus conference.Data sourcesThe 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).ResultsWe 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.LimitationsThere 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.ConclusionsThis 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.Study registrationThis study is registered as PROSPERO CRD42015020625.FundingThe NIHR HTA programme.

BackgroundHealth-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.ObjectivesTo 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.DesignRealist synthesis following Realist and Meta-narrative Evidence Syntheses: Evolving Standards (RAMESES) publication standards.ParticipantsTwenty-four stakeholders took part in interviews.Data sourcesElectronic 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.Review methodsIterative 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).ResultsWe 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.LimitationsThere is a lack of evidence on interventions to promote SDM in older people with complex needs or on interprofessional approaches to SDM.ConclusionsModels 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.Future workThere 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.Study registrationThis study is registered as PROSPERO CRD42016039013.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

BackgroundDementia and diabetes mellitus are common long-term conditions and co-exist in a large number of older people. People living with dementia (PLWD) may be less able to manage their diabetes, putting them at increased risk of complications such as hypoglycaemia. The aim of this review was to identify key mechanisms within different interventions that are likely to improve diabetes outcomes in PLWD.MethodsThis is a realist review involving scoping of the literature and stakeholder interviews to develop theoretical explanations of how interventions might work, systematic searches of the evidence to test and develop the theories and their validation with a purposive sample of stakeholders. Twenty-six stakeholders — user/patient representatives, dementia care providers, clinicians specialising in diabetes or dementia and researchers — took part in interviews, and 24 participated in a consensus conference.ResultsWe included 89 papers. Ten focused on PLWD and diabetes, and the remainder related to people with either dementia, diabetes or other long-term conditions. We identified six context-mechanism-outcome configurations which provide an explanatory account of how interventions might work to improve the management of diabetes in PLWD. This includes embedding positive attitudes towards PLWD, person-centred approaches to care planning, developing skills to provide tailored and flexible care, regular contact, family engagement and usability of assistive devices. An overarching contingency emerged concerning the synergy between an intervention strategy, the dementia trajectory and social and environmental factors, especially family involvement.ConclusionsEvidence highlighted the need for personalised care, continuity and family-centred approaches, although there was limited evidence that this happens routinely. This review suggests there is a need for a flexible service model that prioritises quality of life, independence and patient and carer priorities. 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 their needs.Trial registrationPROSPERO, CRD42015020625. Registered on 18 May 2015.

BackgroundEighty 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.ObjectiveTo provide a theory-driven explanation of the effectiveness of programmes that aim to improve FI in people with advanced dementia in care homes.DesignA 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.Data sourcesThe 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.ResultsThe 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 individuals’ 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.LimitationsThe 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.ConclusionsThis 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 workFuture 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.Study registrationThis study is registered as PROSPERO CRD42014009902.FundingThe National Institute for Health Research Health Technology Assessment programme.

IntroductionIncluding the patient or user perspective is a central organising principle of integrated care. Moreover, there is increasing recognition of the importance of strengthening relationships among patients, carers and practitioners, particularly for individuals receiving substantial health and care support, such as those with long-term or multiple conditions. The overall aims of this synthesis are to provide a context-relevant understanding of how models to facilitate shared decision-making (SDM) might work for older people with multiple health and care needs, and how they might be applied to integrated care models.Methods and analysisThe synthesis draws on the principles of realist inquiry, to explain how, in what contexts and for whom, interventions that aim to strengthen SDM among older patients, carers and practitioners are effective. We will use an iterative, stakeholder-driven, three-phase approach. Phase 1: development of programme theory/theories that will be tested through a first scoping of the literature and consultation with key stakeholder groups; phase 2: systematic searches of the evidence to test and develop the theories identified in phase 1; phase 3: validation of programme theory/theories with a purposive sample of participants from phase 1. The synthesis will draw on prevailing theories such as candidacy, self-efficacy, personalisation and coproduction.Ethics and disseminationEthics approval for the stakeholder interviews was obtained from the University of Hertfordshire ECDA (Ethics Committee with Delegated Authority), reference number HSK/SF/UH/02387. The propositions arising from this review will be used to develop recommendations about how to tailor SDM interventions to older people with complex health and social care needs in an integrated care setting.

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