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

Opening up the unfamiliar and enabling new pathways for movement and becoming: Through, in, and beyond attachment

The philosophy of Deleuze and Guattari opens up vast potential to disrupt and explore some of the confines of attachment theory when considering the development of enchantment, wishful, and magical thinking in childhood. Through connection with the use of the fairy-tale, the authors seek to illuminate and illustrate the lines of flight, which activate resistance against the universalism of attachment theory and linear process of child development. In using the classic tale of Peter Pan as metaphor, and by applying Deleuzian philosophy and mythology, we aim to expand current thinking about the nature of childhood. By translating text into visual meaning, thus creating a lens with which to view an alternative pathway for child development, the complexity of the spatio-temporality of relationships as a contemporary adjunct to attachment theory, is materialised to produce an affective picture of the non-linear dimension and process of development in children. This affective genre illuminates the embodied and sensory aspects of ‘becoming’ which challenges a reductionist view of relationships. In doing so, this allows a ‘state change’ that enables professionals and scholars to see see differently

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

Protocol for a realist review of complex interventions to prevent adolescents from engaging in multiple risk behaviours

Objectives - Adolescent risk behaviours are a key health concern. The purpose of this research is to gain a deeper understanding of how, why, for whom, and in what circumstances complex adolescent risk behaviour prevention programmes are most successful. Methods and analysis - To understand how adolescent risk behaviour prevention programmes work in a real life context, a realist synthesis will be undertaken, operationalised in four phases. Phase one - Developing a framework to map the theoretical and conceptual landscape of adolescent risk behaviour prevention. Guided by stakeholder consultation. Phase two - Formulating initial programme theories through exploration of the literature, along with primary data from professional stakeholder interviews. Phase three - Refining programme theories through more purposeful, in depth screening of the literature, along with primary qualitative data, from young people and professionals. Data will be collected through semi structured focus groups, to explore specific elements of the emerging programme theories. Phase four - Testing programme theories through interviews with youth workers, following consultation with young people, using vignettes to explore the relationship between specific programme theories. This relatively novel method of primary and secondary data integration within a realist synthesis will provide deeper insight in to young peoples lived experience of risk behaviour prevention programmes, while maintaining transparency in the process of programme theory development. Methods and analysis Data analysis - A realist logic of analysis will be used to align data from each phase with context mechanism outcome configurations or specific elements thereof. Substantive theory will then be sought to understand and explain the findings. Ethics and dissemination - This study has been approved by the Ethics committee at Northumbria University, UK. Findings will be disseminated through knowledge exchange with stakeholders, publications in peer-reviewed journals, conference presentations, and formal and informal reports

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