Specialist nursing case management support for carers of people with dementia : a qualitative study comparing experiences of carers with and without Admiral Nursing.

Carers of people with dementia can experience reduced health and wellbeing, but little is known about how best to support them. There is some evidence to suggest that case management may improve outcomes for carers but less evidence about the features of case management services that can effectively support carers of people with dementia. Admiral Nursing operates a case management approach staffed by specialist nurses and is the only service of its kind in the UK dedicated to helping people with dementia and their carers. This paper reports qualitative findings from a mixed methods study of Admiral Nursing. For the qualitative strand of the project, data were collected in focus groups and in-depth interviews with carers of people with dementia (n= 35) and analysed thematically using the Framework approach. The aim of this analysis was to understand differences between the experiences of the carers in our sample with and without Admiral Nursing, applying Freeman’s model of continuity of care (Freeman et al., 2000). Participants who had received Admiral Nursing were recruited from two geographical locations and carers without experience of this service were recruited from two different areas. We found that carers in our sample felt ‘supported’ in circumstances where they received an ongoing service from an Admiral Nurse or other professional with expertise in dementia who was able to develop a meaningful relationship with them over time. We conclude that ongoing support, expertise in dementia and a meaningful relationship are key features of relationship continuity common in carers’ reports of feeling supported. Specialist nurses are well placed to provide this continuity

Women and dementia : All but forgotten? A literature review

We carried out a review of what, if anything, existing research says about women's experiences. The purpose of this was to provide an initial framework of issues to explore in the narrative element of the project, this would allow us to both build on and, where necessary, challenge what evidence currently exists. We report this review work in this paper, first explaining how we found and selected our material and then presenting our thematic analysis of it

Vision rehabilitation services : what is the evidence? Final report.

Sight loss affects all aspects of well-being including daily functioning and mental health. Demographic trends suggest that the number of people with visual impairment is set to rise significantly, with many people experiencing an additional disability or health problems. By 2050, the number of blind and partially sighted people in the UK is estimated to increase by around 122 per cent, to approximately four million. Promoting preventive and rehabilitation interventions is recognised as a high priority for all care settings as a way of reducing demands on health and social care services. This research, funded by the Thomas Pocklington Trust, aimed to provide an overview of the evidence base for community-based vision rehabilitation services for people over the age of 18 with visual impairment. The study focused on rehabilitation services funded by local authorities to find out how these services are currently supporting people with visual impairment, what possible outcomes they might achieve and to identify gaps in the evidence base about current service arrangements. The study was carried out in England. Findings were intended to inform a future full scale evaluation as well as inform services

Can general practitioner commissioning deliver equity and excellence? : Evidence from two studies of service improvement in the English NHS

Objectives: To explore some of the key assumptions underpinning the continued development of general practitioner-led commissioning in health services. Methods: Qualitative data from two studies of service improvement in the English NHS were considered against England's plans for GP-led commissioning. These data were collected through in-depth interviews with a total of 187 professionals and 99 people affected by services in 10 different primary care trust areas across England between 2008 and 2009. Results: Internationally, GPs are seen to have a central position in health systems. In keeping with this, the English policy places emphasis on the 'pivotal role' of general practitioners, considered to be ideally placed to commission in the best interests of their patients. However, our evidence suggests that general practitioners do not always have a pivotal role for all patients. Moreover, it is planned that the new commissioning groups in England will not be subject to top-down performance management and this raises the question of how agreed quality standards will be met under the proposed new system. Conclusions: This paper questions the assumption that GPs are best placed to commission health services in a way that meets quality standards and leads to equitable outcomes. There is little evidence to suggest that GPs will succeed where others have failed and a risk that, without top-down performance management, service improvement will be patchy, leading to greater, not reduced, inequity

What outcomes are important to people with long-term neurological conditions using integrated health and social care?

Measuring the outcomes that are meaningful to people with long-term neurological conditions (LTNCs) using integrated health and social care services may help to assess the effectiveness of integration. Conventional outcomes tend not to be derived from service user experiences, nor are they able to demonstrate the impact of integrated working. This paper reports findings about outcomes identified as being important to people with LTNCs using integrated services. We undertook qualitative work with five community neuro-rehabilitation teams that were integrated in different ways and to different degrees. In-depth, semi-structured interviews were conducted with 35 people with LTNCs using these teams. Data were collected between 2010 and 2011 and analysed using an adapted version of the Framework approach. We identified 20 outcomes across three domains: personal comfort outcomes, social and economic participation outcomes, and autonomy outcomes. Inter-relationships between outcomes, both within and across domains, were evident. The outcomes, and the inter-relationships between them, have implications for how individuals are assessed in practice

Dementia : through the eyes of women

Dementia disproportionately affects women but the experiences and voices of women are missing from the research and literature. This project provides a snapshot of the experiences, thoughts and opinions of women affected by dementia: women with a diagnosis of dementia, women who are caring for family or friends, and women working in one of the caring professions which support people with dementia. This report aims to inspire people to think differently about women and dementia by using stories and reflections from individual women to inform the debate in a unique and insightful way

Updated meta-review of evidence on support for carers

Objective To update a 2010 meta-review of systematic reviews of effective interventions to support carers of ill, disabled, or older adults. In this article, we report the most promising interventions based on the best available evidence. Methods Rapid meta-review of systematic reviews published from January 2009 to 2016. Results Sixty-one systematic reviews were included (27 high quality, 25 medium quality, and nine low quality). The quality of reviews has improved since the original review, but primary studies remain limited in quality and quantity. Fourteen high quality reviews focused on carers of people with dementia, four on carers of those with cancer, four on carers of people with stroke, three on carers of those at the end of life with various conditions, and two on carers of people with mental health problems. Multicomponent interventions featured prominently, emphasizing psychosocial or psychoeducational content, education and training. Improved outcomes for carers were reported for mental health, burden and stress, and wellbeing or quality of life. Negative effects were reported in reviews of respite care. As with earlier work, we found little robust evidence on the cost-effectiveness of reviewed interventions. Conclusions There is no ‘one size fits all’ intervention to support carers. There is potential for effective support in specific groups of carers, such as shared learning, cognitive reframing, meditation, and computer-delivered psychosocial support for carers of people with dementia. For carers of people with cancer, effective support may include psychosocial interventions, art therapy, and counselling. Carers of people with stroke may also benefit from counselling. More good quality, theory-based, primary research is needed. </jats:sec

Using a systematic review to uncover theory and outcomes for a complex intervention in health and social care: : Life Story Work for people with dementia as a worked example

Objectives: To use a systematic review to uncover theories of change and outcomes for Life Story Work (LSW) in dementia care to inform a feasibility study. We describe the methods and discuss their use in identifying appropriate outcomes for evaluative research, and their potential for improving evaluation of ‘theory poor’ interventions. Life Story Work (LSW) involves gathering information about a person, their history and interests and producing a tangible output, usually a book. It is used increasingly in dementia care; however, theory about if, how and why it affects which outcomes is poorly developed, making the choice of evaluation methods and appropriate outcomes difficult. Methods A systematic review, carried out using Centre for Reviews and Dissemination guidelines, searched for evidence on underlying theory, good practice, and effectiveness of LSW to inform a feasibility study. For the theory element, a ‘landscaping review’ analysed the extracted text, using qualitative techniques and mind maps to uncover both explicit and implicit links (causal routes) between LSW and outcomes. We triangulated review findings with qualitative research (focus groups) with people with dementia, caregivers, and professionals that explored the outcomes that they would like to see from LSW. Results Of the 56 publications reviewed, only 16 were useful for the theory analysis. Six overarching outcomes were identified: the self-worth and empowerment of people with dementia; individual psychological outcomes; improved relationships between care staff and the individual with dementia; better care; more effective engagement of family members/carers within the care setting; and helping carers to cope. Twelve final theories linking these outcomes to LSW via a causal pathway were elicited. There was substantial overlap in the outcomes identified by the review and by carers, people with dementia and professionals. Together, the results informed our choice of outcome measures for a pilot evaluation. Conclusions This approach may enable researchers to identify and develop the theory necessary before evaluation of a complex intervention in other under- or un- theorised areas. It has the potential both to shorten development stages (and thereby costs) in intervention research and improve the intervention itself

Household finances of Carer's Allowance recipients

This report presents findings from qualitative research into the experiences of people claiming or with an underlying entitlement to Carer's Allowance (CA). The findings are based on in-depth interviews with 44 people who claimed CA or had an underlying entitlement to it, in three areas of the UK in summer 2013. The aim of the research was to better understand the following research questions: • How is CA viewed in terms of the household budget, and does this vary by type of household? • How do recipients use CA and what would be the impact of non-receipt? • How does the use of CA vary depending on who is being cared for and where? • What led to the decision to claim CA? • Has receipt of CA had different impacts at different times of the caring career? • What impact has caring had on labour market participation