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

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

Traveller community and health practitioner stories of self and each other: a poststructural narrative analysis

Research attention to Gypsy and Traveller health has grown in recent decades and highlights significant inequalities in health and access to services experienced by these groups. Existing work in this area tends to prioritise consideration of how Gypsies and Travellers speak from a position of belonging to their particular ethnic or cultural group, often producing fixed and universal claims about the health beliefs and experiences of Traveller Communities. Little research explores the social production of Gypsy and Traveller health identities, or how ethnicity may intersect with wider identity positions in Traveller Community accounts of health. In addition, health practitioner and Traveller Community accounts have rarely been considered alongside one another, and the ways health practitioners construct identities in relation to their work with Traveller Communities has largely evaded the gaze of health and sociological research. This thesis sought to contribute to understanding of these areas. It examined the identity positions Traveller Community members and health practitioners project for themselves and each other, and where these identities collide or coalesce in stories of health interactions. Poststructuralist informed narrative inquiry guided interviews with Romany Gypsies, Irish Travellers and health practitioners working with these groups. This approach was chosen for its view of identity as multiple and shifting, and as it enables concurrent attention to both the discourses governing possibilities for talk about Traveller Community health, and how actors work within these constraints to give accounts of themselves. An analysis of participant narratives reveals two overarching areas of potential concordance or dissonance in the identity positions claimed by health practitioners and Traveller Community members. The first contrasts the ‘body work’ practitioners undertook to downplay ‘professional’ identity and position themselves as close to community members, with Gypsy and Traveller requests for greater access to professional advice and medical screening. The second concerns divergence in the extent to which Traveller Communities were presented, and presented themselves, as future-oriented in relation to their health. Drawing on poststructuralist theory, I argue that representations of Gypsy and Traveller orientations to time and space are central in the positioning of these groups as compliant or resistant to health advice, and to understanding relations of power and resistance in health interactions. The thesis generates insights for communication between health workers and Traveller Community members, suggesting a need for attention not only to cultural or structural barriers, but reflection on how practice is influenced by the stories we tell about Traveller Communities, the identities practitioners claim for themselves in relation to their work with ‘disadvantaged’ groups, and the interests these serve

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

Housing Voices: Using theatre and film to engage people in later life housing and health conversations

Purpose: Quality, accessible and appropriate housing is key to older people’s ability to live independently. The purpose of this paper is to understand older people’s housing aspirations and whether these are currently being met. Evidence suggests one in five households occupied by older people in England does not meet the standard of a decent home. The Building Research Establishment has calculated that poor housing costs the English National Health Service £1,4bn annually (Roys et al., 2016). Design/methodology/approach: This paper reports on the findings of a participatory theatre approach to engaging with those not often heard from – notably, those ageing without children and older people with primary responsibility for ageing relatives – about planning for housing decisions in later life. The project was led by an older people’s forum, Elders Council, with Skimstone Arts organisation and Northumbria University, in the north east of England. Findings: Findings suggest there is an urgent need to listen to and engage with people about their later life housing aspirations. There is also a need to use this evidence to inform housing, health and social care policy makers, practitioners, service commissioners and providers and product and service designers, to encourage older people to become informed and plan ahead. Research limitations/implications: Use of a participatory theatre approach facilitated people to explore their own decision making and identify the types of information and support they need to make critical decisions about their housing in later life. Such insights can generate evidence for future housing, social care and health needs. Findings endorse the recent Communities and Local Government (2018) Select Committee Inquiry and report on Housing for Older People and the need for a national strategy for older people’s housing. Originality/value: Although this call is evidenced through an English national case study, from within the context of global population ageing, it has international relevance

Patient Experience of Integrated Care within the United Kingdom: A Systematic Review

Introduction Integrated care and patient experience are central to the coordination and delivery of high quality health and social care in the UK, but their joint application is poorly understood. This systematic review aimed to gain an understanding of patient experience within current integrated care services in the UK, and specifically, whether they reflect person-centred coordinated care (PCCC). Methods Following PRISMA, electronic databases (ProQuest, EBSCO and Cochrane Library) were searched from 2012 to 2019 for primary, peer-reviewed literature. Papers were included where patients’ or carers’ experiences of integrated care were reported. Papers were excluded where they focused on acute integrated care interventions, measured experience via satisfaction scores only, or findings lacked sufficient depth to answer the research question. Quality was assessed using Mixed Methods Appraisal Tool, and findings synthesised using a framework approach, incorporating the Rainbow Model of Integrated Care and Measuring Integrated Care Patient Framework. Results Sixteen studies were included. Person-centred and shared responsibility experiences were most often discussed. Experiences were not always described as positive and some patients experienced a lack of PCCC. Clinical, professional/organisational and functional integration processes were associated with experiencing domains of PCCC. Discussion People with complex needs experience a lack of coordination across teams and wider community resources, and limited associations were made between integration processes and patient experience. Further research which gives context to individual experience, provides greater detail of integration processes and utilises validated patient experience measures of PCCC is required to understand the association between integration processes and domains of PCCC

Using Computer Assisted Qualitative Data Analysis Software (CAQDAS; NVivo) to assist in the complex process of realist theory generation, refinement and testing.

There have been several calls for more transparency in realist methods, particularly in the complex process of programme theory development and refinement. This paper will describe the way in which Computer Assisted Qualitative Data Analysis Software, specifically, NUD*IST Vivo (NVivo), was used to build and refine programme theories (using literature and interview data) in a realist evaluation. This article presents the evolving and complex process of coding several data sources to nodes and child nodes, whilst writing ‘attached memos’ to highlight the process of theory generation. In this project, NVivo helped create an explicitly documented and evidenced audit trail of the process of programme theory refinement, answering to calls for further transparency in realist anal. RAMESES I and II have provided a platform to improve transparency in reporting realist research, by developing consensus and evidence-based reporting guidelines. We propose that the use of NVivo in realist approaches can help structure the iterative and by nature ‘messy’ process of generating, refining and testing complex programme theories when drawing on multiple data sources simultaneously. This effectively creates a structured track record of the analytical process, which increases its rigour and transparency in the analysis process