The Realist Evaluation of a Palliative Integrated Care Pathway in Primary Care: What Works, For Whom and in What Circumstances?

Background: Finding effective ways to care for people with palliative care needs is a national priority. A primary care locality has developed and implemented an Integrated Care Pathway (ICP) for those with life limiting illnesses. It focuses on identifying patients early, regardless of disease type, and uses proactive and patient centred interventions to plan for a good death. Although palliative care pathways present a promising practice framework, the literature does not allow for an assessment of how and when they work best. This thesis aimed to explain which parts of the ICP worked best, for whom and in what circumstances. Design: Realist evaluation was used to guide the analysis of multiple data strands: quantitative data from the GP practices; interviews with palliative care patients and bereaved relatives; bereaved relatives and matched health care professional questionnaires; focus groups with health care professionals; consultation recordings with palliative care patients and their GPs. Results: The results of this study are multifaceted, and focus on the conditions of successful implementation, such as the presence of a champion; palliative care registration decisions for all diagnoses and the importance of leadership and peer support; advance care planning, including the roles of mental capacity and time constraints; communication in consultations and the role of patient and GP traits; and using open multicomponent communication strategies to facilitate home deaths. Discussion: A realist approach has exposed how the ICP implementation has led to positive practice and patient level outcomes. The ICP can be construed as a translational tool, which enables the operationalisation of policy directives on shared decision making, proactivity and patient centeredness in primary care. In the context of palliative care, this study allows important reconceptualisations of shared decision making and advance care planning to be presented

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

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

Introduction to Realist Approaches

This half day program will introduce the key concepts that underpin realist approaches, with special emphasis on evaluation and literature reviews. Realist evaluation has been developed to investigate and explain how and why programs and polices work differently for different people or in different contexts. Realist review applies the same underlying principles to the synthesis of existing literature and evidence. The workshop will have interactive exercises to show how realist evaluations and realist literature reviews differ from other approaches in their intent, design and analysis. The workshop is designed for people who want to determine how – and if – realist approaches might work for them, and to build understanding of basic concepts and terminology before participating in the CARES conference. It will also provide opportunities to share ideas and questions, and to establish networks prior to the conference. Associate Professor Emma Williams is Principal Scientist of Evaluation and Knowledge Impact at the Northern Institute, Charles Darwin University, Australia. She previously worked in government, including a stint as Director of Social Policy with the Northern Territory Government, where she was involved in program design as well as policy development. Before being introduced to realist approaches, she struggled with how to determine which aspects of ‘what works’ in other jurisdictions might apply in Northern Territory contexts. She is currently conducting a number of realist and realist informed evaluations and research projects, primarily in northern Australia and eastern Indonesia, and was a Delphi panel member for the RAMESES II Project

‘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

Layering programme, pathway and substantive theories in realist evaluation

Developing programme theory is an essential part of any realist project. Often researchers can struggle with this process of initial generation, particularly when theory from different levels of abstraction is desired or required. The RAMESES guidelines for synthesis state that excellent refinement of programme theory requires the relationship between the programme theory and relevant substantive theory to be identified. Furthermore, developing realist informed programme theories in CMO configurations can aid the researcher throughout the evaluation or synthesis process, however the operationalisation of this has not always been clear. Using the example of a realist evaluation of a Citizens Advice Bureau project we illustrate how programme theories were developed and how theory development can be layered in order to enhance sense making of how the programme works, for whom, in which circumstances. Thus we use programme, pathway and substantive theories to shape and enhance our understanding prior to data collection and theory testing. Programme theories consist of informed ‘hunches’ about how the programme works, which sat underneath a layer of pathway theories which were defined in the JRF report ‘How Does Money Influence Health’ (Benzeval et al., 2014). A range of substantive theories were identified using ‘ABC of Behaviour Change Theories’ (Michie et al., 2014) and the project teams own theory knowledge. Layering theories prior to testing using mixed methods allowed for (1) a greater understanding of the programme and (2) the testing of not only programme but also pathway and substantive theories. This demonstration of theory layering will help researchers to engage with substantive theory earlier in the realist research process and throughout

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

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

Namaste Care in the home setting: Developing initial realist explanatory theories and uncovering unintended outcomes.

Introduction The End-of-Life Namaste Care Program for People with Dementia, challenges the misconception that people with dementia are a ‘shell’; it provides a holistic approach using the five senses, which can provide positive ways of communicating and emotional responses. It is proposed Namaste Care can improve communication and the relationships families and friends have with the person with dementia. Previously used in care homes, this study is the first to explore the pioneering use of Namaste Care in people’s own homes. Objective To develop initial programme theories detailing if, how and under which circumstances Namaste Care works when implemented at home. Design A qualitative realist approach following the RAMESES II guidelines was employed to understand not only whether Namaste Care has positive outcomes, but also how these are generated, for whom they happen and in which circumstances. Setting A hospice in the North East of England, operating in the community, through volunteers. Participants Programme theories were developed from three focus groups with volunteers implementing Namaste Care (n=8; n=8; n=11) and eight interviews with family carers (n=8). Results Four refined explanatory theories are presented: increasing engagement, respite for family carers, importance of matched volunteers and increasing social interaction. It was identified that while Namaste Care achieved some of the same goals in the home setting as it does in the care home setting, it could also function in a different way that promoted socialisation. Conclusions Namaste Care provides holistic and personalised care to people with both moderate and advanced dementia, improving engagement and reducing social isolation. In the present study carers often chose to use Namaste Care sessions as respite. This was often linked to their frustration of the unavoidable dominance of task-focussed care in daily life. Individualised Namaste Care activities thus led to positive outcomes for both those with dementia and their carers