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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.

Additional file 1. SRQR Checklist.

Additional file 2. Interview Guide.

BackgroundDecision impact studies have become increasingly prevalent in oncology in recent years, particularly in breast cancer prognostic research. Such studies, which aim to evaluate the impact of a test on clinical decision-making, appear to be a new form of knowledge with the potential to impact clinical practice and regulatory decision-making in genomic medicine. Yet their origins, intended purpose and usage have not yet been explored. The objectives of this review are to identify and characterize decision impact studies in genomic medicine in cancer care. This review is comprised of two parts. First, we will conduct a scoping review to catalogue the characteristics of decision impact studies. The scoping review will be followed by a bibliometric analysis to understand the role of actors and institutions in the production and dissemination of this new knowledge, by identifying influential articles, authors, global research trends and collaboration networks. MethodsWe will conduct a scoping review and a bibliometric analysis of the scoping review results. The search will include four databases, Medline, Embase, Scopus and Web of Science, using a comprehensive search strategy developed through a preliminary review of the literature. Arksey & O’Malley’s scoping review methodology, with updates by Levac et al. will be used, and the review will be reported following the PRISMA-ScR checklist. The FT Model will be used to collect and analyze data on clinical utility of decision impact studies. Our bibliometric analysis, using Bibliometrix software, will elucidate the evolution of these studies and provide data on the trends, influences and networks emerging in the field.DiscussionThis review will be a first step in understanding the evolution and uses of these studies and their potential influence on the integration of emerging genomic technologies into clinical practice. By exploring their origin and evolution across space and time, this study will equip future research to investigate the role of these studies in decision-making for regulatory processes, including market access and public and private coverage decision-making. Systematic review registration: Open Science Framework osf.io/hm3jr

Introduction: Despite growing international interest in life story work as a tool for person-centred dementia care, there is little agreement on what constitutes good practice and little evidence from the perspectives of people with dementia or their family carers. Design and methods: This paper reports the findings from the qualitative element of a larger study looking at the feasibility of evaluating life story work. Ten focus groups were held with 73 participants: four groups of people with dementia (25 participants), three with family carers (21 participants), and three with staff, professionals and volunteers with experience of life story work (27 participants). Findings: It became apparent through our focus groups that, when people talk about ‘life story work’, different people mean different things. This related to both process and outcomes. In particular, a person with dementia may have very different views from others about what life story work is for and how their life story products should be used. There was general agreement that a good practice approach would be tailored to the individual needs and preferences of the person with dementia. However, in practice many settings used templates and the process was led by staff or completed by family carers. Conclusion: We produced nine key features of good practice which could be used to guide the life story work process. Key elements include: the recognition that not everyone will want to take part in life story work and that some people may even find it distressing; the importance of being led by the person with dementia themselves; the need for training and support for staff, carers and volunteers; and the potential for life story work to celebrate the person’s life today and look to the future.

Supplemental material, HSR897091 Supplemental Material for Using a systematic review to uncover theory and outcomes for a complex intervention in health and social care: a worked example using life story work for people with dementia by Gillian Parker, Kate Gridley, Yvonne Birks and Julie Glanville in Journal of Health Services Research & Policy