Quality of life in long-term conditions (ViPER)

There is an increasing policy drive for nurses to encourage and operationalise self-management and collaborative partnerships with people with long-term conditions. Central to this is a development of understanding of the premises to a good quality of life. This presentation reports on a project in which the quality of life of people with Multiple Sclerosis (MS) was assessed. In parallel, the researchers examined the meaning attributed to the term in policy documentation such as the NSF for Long-Term conditions (2005) (Lhussier 2009). It emerges that quality of life is premised upon an understanding of six oppositional pairs of: • Life and death (because to talk about ‘quality of life’ is to assume a clear and fundamental difference between the two concepts) • Health and disease (because people with long-term conditions are often assumed to have a poorer quality of life) • Independence and dependence (because maintaining independence is one of the key aim of health care practice in long-term conditions) • Empowerment and disempowerment (because patient empowerment is a key policy driver) • Certainty and uncertainty (as the uncertainty of an illness trajectory impacts greatly on people’s perception of their quality of life) • Ability and disability (because disability is to be avoided for as long as possible in MS) Drawing on the data collected, this presentation aims to expose and critique these six oppositional pairs so that understanding of quality of life in long-term conditions can be enhanced and contextualised. Thus this presentation does not aim at solving definitional or measurement issues, but at engaging practitioners in critical thinking about such a key concept as quality of life. Such an engagement in questioning of pre-understandings is crucial for nursing practice to evolve and adapt to changing population needs, as the prevalence of long-term conditions continues to increase

A realist synthesis of the evidence on outreach programmes for health improvement of Traveller Communities

Background: Improving the health of Traveller Communities is an international public health concern but there is little evidence on effective interventions. This study aimed to explain how, for whom and in what circumstances outreach works in Traveller Communities. Methods: A realist synthesis was conducted. Systematic literature searches were conducted between August and November 2011. Grey literature was sought and key stakeholders were involved throughout the review process. Iterative steps of data extraction, analysis and synthesis, followed by additional searches were undertaken. Results: An explanatory framework details how, why and in what circumstances participation, behaviour change or social capital development happened. The trust status of outreach workers is an important context of outreach interventions, in conjunction with their ability to negotiate the intervention focus. The higher the outreach worker’s trust status, the lower the imperative that they negotiate the intervention focus. A ‘menu’ of reasoning mechanisms is presented, leading to key engagement outcomes. Conclusions: Adopting a realist analysis, this study offers a framework with explanatory purchase as to the potential of outreach to improve health in marginalised groups

Exploring the possibility of explicitly combining realist and system thinking: an exemplar

Realist evaluation has gained momentum in the last decade as key mixed methods to understand and engage with socially complex systems. As this interest grows, there is also increasing interest in its possible combination with other complexity oriented approaches. We suggest that the epistemology of Soft System Methodology (SSM), with its focus on constructing models to account for the phenomenon being examined, complements that of realist evaluation, which provides theory driven explanations of what lies beneath complex social programmes. In SSM, models are built and compared to the real world using stakeholders’ descriptions of complex programmes based on structured thinking. Realist evaluation places emphasis on stakeholder engagement to enhance understanding of how complex programmes work. In this presentation, we argue that SSM can support the development of theory driven explanations of complex phenomena. Exemplar: SSM maps were used within a realist evaluation of an Integrated Care Pathway (ICP) for patients with palliative care needs in North East England. In this study, the maps were co-created with service developers and implementers over a series of focus groups in order to visualise and detail the pathway and its varied resources. Chains of causality were hypothesised and tested through qualitative and quantitative data collection. The project provided theory based explanations of how, why and in which circumstances the care pathway was most effective. We conclude that using SSM with realist evaluation can provide; a) a systematic approach to understanding complexity within programmes; b) a framework for stakeholder involvement; c) explicit identification of contextual intricacies. The combination of SSM and realist evaluation presents an innovation in mixed methods research designs, which can serve a key role in advancing understanding of complex social issues. We hope this presentation will stimulate debate and open up the possibilities of explicitly combining realist and system thinking

Exposing the impact of Citizens Advice Bureau services on health: a realist evaluation protocol

Introduction Welfare advice services can be used to address health inequalities, for example, through Citizens Advice Bureau (CAB). Recent reviews highlight evidence for the impact of advice services in improving people's financial position and improving mental health and well-being, daily living and social relationships. There is also some evidence for the impact of advice services in increasing accessibility of health services, and reducing general practitioner appointments and prescriptions. However, direct evidence for the impact of advice services on lifestyle behaviour and physical health is currently much less well established. There is a need for greater empirical testing of theories around the specific mechanisms through which advice services and associated financial or non-financial benefits may generate health improvements. Methods and analysis A realist evaluation will be conducted, operationalised in 5 phases: building the explanatory framework; refining the explanatory framework; testing the explanatory framework through empirical data (mixed methods); development of a bespoke data recording template to capture longer term impact; and verification of findings with a range of CAB services. This research will therefore aim to build, refine and test an explanatory framework about how CAB services can be optimally implemented to achieve health improvement. Ethics and dissemination The study was approved by the ethics committee at Northumbria University, UK. Project-related ethical issues are described and quality control aspects of the study are considered. A stakeholder mapping exercise will inform the dissemination of results in order to ensure all relevant institutions and organisations are targeted

‘Everything takes too long and nobody is listening’: Developing theory to understand the impact of advice on stress and the ability to cope

Shrinking state spending in the UK has been accompanied by a profound restructuring of the welfare system, leading to financial insecurity for many people, culminating in extreme stress and serious deterioration of physical and mental health. Theory surrounding the impact of welfare advice on stress is lacking; this paper undertakes an in depth exploration of the experiences of stress among welfare advice seekers, considering these in light of existing substantive theories of stress and coping to generate new insight. A thematic analysis explored the experiences of stress in welfare advice seekers. Four overarching themes and twelve subthemes emerged. They are further understood utilising traditional theories of stress (Transactional Model of Stress and Coping and the Conservation of Resources theory), which then underpin the development of a ‘Stress Support Matrix’ and a holistic theory related specifically to welfare, stress and coping

Creating, disseminating and mobilising evidence on outreach services for marginalised groups – development of a decision making tool.

Background: Outreach is commonly utilised for engaging marginalised groups. However, little guidance exists for those designing and commissioning outreach programmes on how to maximise effectiveness potential. Aim: This presentation reports on the development of a decision aid to enhance programme specificity when designing and commissioning outreach interventions. Methods: This work builds on a realist evidence synthesis, funded by the National Institute for Public Health Research and associated with FUSE (the Centre for Translational Research in Public Health), that examined how and in what circumstances outreach interventions are successful in engaging and improving the health of one socially excluded group, Traveller Communities. Subsequent work was undertaken to disseminate these findings and explore their potential impact for practice among key stakeholders. This led to partner organisations expressing an interest in the development of a decision aid to facilitate the commissioning and design of outreach programmes most likely to be effective. Results: Three key components of outreach work in tangent to influence the success of interventions and form the basis of the decision aid: the degree to which the outreach worker is trusted; the extent of intervention flexibility; and desired outcomes. Where outreach workers are highly trusted, outreach programmes can achieve a range of health outcomes and there is less need for intervention flexibility. However, outreach workers with no pre-established links need to exercise flexibility to respond to needs as they arise. This can be used as a strategy to build trust, may improve access to statutory services, but is less likely to lead to long term engagement. Conclusions: The process of distilling learning from a substantial review into a decision making tool, integrating the views of key practice partners will be detailed in this presentation

What’s in a mechanism? Development of a key concept in realist evaluation

Background: The idea that underlying, generative mechanisms give rise to causal regularities has become a guiding principle across many social and natural science disciplines. A specific form of this enquiry, realist evaluation is gaining momentum in the evaluation of complex social interventions. It focuses on ‘what works, how, in which conditions and for whom’ using context, mechanism and outcome configurations as opposed to asking whether an intervention ‘works’. Realist evaluation can be difficult to codify and requires considerable researcher reflection and creativity. As such there is often confusion when operationalising the method in practice. This article aims to clarify and further develop the concept of mechanism in realist evaluation and in doing so aid the learning of those operationalising the methodology. Discussion: Using a social science illustration, we argue that disaggregating the concept of mechanism into its constituent parts helps to understand the difference between the resources offered by the intervention and the ways in which this changes the reasoning of participants. This in turn helps to distinguish between a context and mechanism. The notion of mechanisms ‘firing’ in social science research is explored, with discussions surrounding how this may stifle researchers’ realist thinking. We underline the importance of conceptualising mechanisms as operating on a continuum, rather than as an ‘on/off’ switch. Summary: The discussions in this article will hopefully progress and operationalise realist methods. This development is likely to occur due to the infancy of the methodology and its recent increased profile and use in social science research. The arguments we present have been tested and are explained throughout the article using a social science illustration, evidencing their usability and value

Paramedic information needs in end-of-life care: a qualitative interview study exploring access to a shared electronic record as a potential solution

Background: Limited access to, understanding of, and trust in paper-based patient information is a key factor influencing paramedic decisions to transfer patients nearing end-of-life to hospital. Practical solutions to this problem are rarely examined in research. This paper explores the extent to which access to, and quality of, patient information affects the care paramedics provide to patients nearing end-of-life, and their views on a shared electronic record as a means of accessing up-to-date patient information. Method: Semi-structured interviews with paramedics (n = 10) based in the north of England, drawn from a group of health and social care professionals (n = 61) participating in a study exploring data recording and sharing practices in end-of-life care. Data were analysed using thematic analysis. Results: Two key themes were identified regarding paramedic views of patient information: 1) access to information on patients nearing end-of-life, and 2) views on the proposed EPaCCS. Paramedics reported they are typically unable to access up-to-date patient information, particularly advance care planning documents, and consequently often feel they have little option but to actively treat and transport patients to hospital – a decision not always appropriate for, or desired by, the patient. While paramedics acknowledged a shared electronic record (such as EPaCCs) could support them to provide community-based care where desired and appropriate, numerous practical and technical issues must be overcome to ensure the successful implementation of such a record. Conclusions: Access to up-to-date patient information is a barrier to paramedics delivering appropriate end-of-life care. Current approaches to information recording are often inconsistent, inaccurate, and inaccessible to paramedics. Whilst a shared electronic record may provide paramedics with greater and timelier access to patient information, meaning they are better able to facilitate community-based care, this is only one of a series of improvements required to enable this to become routine practice

Operationalisation of realist synthesis as a PhD student; what works, for whom, and in what circumstances?

Introduction: Operationalisation of realist methods can be challenging (Dalkin et al. 2015). Protocols and standards do exist in the literature to guide the process of realist informed research: Rycroft Malone et al (2012), Saul et al (2013), RAMESES (2013), Greenhalgh et al (2014) Blane et al (2015). However Realist methodologies are advocated for the exploration of complex interventions in a variety of subject areas and so are likely to require individually tailored approaches. This heterogeneity of process can affect the progress of novice realists, especially those who find themselves as doctoral students working more alone than is the norm in realist research. Objectives: This poster illustrates the approaches taken by three doctoral students undertaking realist synthesis as part of a PhD. The Projects: Project 1 - The mobile clinical skills and simulation facility was unique in the UK at the time of its launch, and is now the subject of a PhD (realist synthesis and realist evaluation). Published literature was very limited, so the revelation that doing stakeholder interviews was not considered primary data and was indorsed as part of a realist synthesis was a pivotal point in understanding and addressing the way forward in a realist synthesis of an intervention which at first appeared to be theory blind. Project 2 - Saul et al’s (2013) protocol for a rapid realist review (RRR) suggests a composition of essential team members. My RRR was undertaken as part of a PhD, therefore, instead of engaging a local reference group and expert panel throughout the RRR as Saul et al. (2013) suggest, guidance was sought from the PhD supervision team, who have a breadth of knowledge of care planning and realist methodology and thus fulfil the role of the local reference group and expert panel. Project 3 – As a PhD student new to both realist methods, and the subject area, prevention of risk behaviour in adolescents, a large amount of time was spent submerged in the literature. Unfamiliarity with the specifics of the subject impacted on both retroductive theorizing, and application to ethics in order to carry out consultations with key stakeholders. A key issue in this was reaching an agreement on when consultation becomes primary data in relation to research governance. Addressing and resolving methodological issues is an ongoing process. Discussion: Looking for a Realist review recipe is a natural yearning as a PhD student who is unfamiliar or uncertain about using this methodology. Three PhD students have undertaken different approaches to their realist studies modifying the standards, protocols and methods to find a bespoke way to explore their respective unique complex interventions with a realist lens. The acceptance of uncertainty and the importance of theorizing from a plethora of sources is fundamental for realist doctoral students