EU-WISE: Enhancing self-care support for people with long term conditions across Europe

EU-WISE: Enhancing self-care support for people with long term conditions across Europe Summary framework and study protocol for the EU-WISE intervention EUGENIE Project partners: SOTON UNWE UNAV UniO UoC RUNMC EHSF PT Coordinator 1

Contents 1. Background... 3 2. Social networks research and implementation programme... 3 2.1 Micro level analysis... 3 2.2 Meso level analysis... 3 2.3 Networks based intervention... 4 3. EU-WISE intervention... 5 3.1 Diabetes as a critical case study... 5 3.2 Method of intervention development... 5 3.3 EUGENIE intervention... 6 3.3.1 Core intervention... 6 3.3.2 Added components of the EUGENIE intervention... 7 3.3.3 Delivery and Evaluation of the EUGENIE Intervention... 9 EU-WISE has received funding from the European Union Seventh Framework Programme (FP7) Health under grant agreement n 279081 2

1. Background Self-management support is recognised as a central element of chronic disease management and is promoted internationally and within European health policy. There is a need to devise workable strategies for self-management support which are able to address the needs of socially disadvantaged people through making use of available technologies, personal, community and institutional resources. Social network research is needed to re-dress the balance between individual and wider social influences in the management of health conditions. Specifically, it brings into focus how social support and network ties can be harnessed to bring new resources and relationships into self-management support. 2. Social networks research and implementation programme The EU-WISE programme was developed to draw on social network approaches to help understand Chronic Illness Management (CIM) and to translate the generated new knowledge into interventions. In this context, EU-WISE draws on relationships and societal influences to offer a deeper understanding of the different mechanisms involved in the management of chronic conditions. Social networks are incorporated in the EU-WISE programme in three different ways. 2.1 Micro level analysis On the micro level we are using biographical interviews and a network mapping technique in order to explore the meaning and contribution of relationships to networks, the nature of the context and content of illness work undertaken. We know that habitus, different types of capital, and relational positioning are relevant to illness management in a broad sense, particularly in terms of gaining access to the GP or primary care. Here we want to extend the analysis to in-depth accounts, highlighting how broader cultural structures can be worked into personal narratives to illustrate how self-management support is enacted according to different habitus, critical moments and changes over time. Using biographical interviews allows us to explore in depth the role and development of networks, and who does what, as part of long-term condition management over time. 2.2 Meso level analysis On the meso level we are using in-depth interviews and social network analysis in order to explore the contribution and potential of the voluntary sector to self-management support. There is at present an expanding role for voluntary and community organisations (VCOs) in operationalising health and social policies. However, while the potential of the voluntary sector to provide resources, emotional, social and practical support for people with long-term conditions is widely acknowledged, it is poorly understood and specified. We will address this by mapping and analysing the structure and functions of inter-organisational networks in a comparative context. This is likely to offer insight into the ability of VCOs to access, modify and tailor self-management resources to individual needs and enhance our understanding of the sustainability and outreach of different local organisations. The latter is particularly relevant in a context of austerity politics, where the provision of funding for local and voluntary initiatives is treated as a low level priority. 3

2.3 Networks based intervention EU-WISE - Project No 279081 The final part of our work aims to identify whether and how the use of social networking methods can enhance or change existing approaches to self-management and if such methods can fruitfully be piloted, adapted, and implemented across a variety of European contexts. The aims of the EU- WISE intervention will be: to raise awareness of social networks (both at the level of personal communities and community organisational level); to use social networks to engage patients in reflecting on their needs and support, help them access further resources and knowledge and introduce practices related to lifestyle, illness management, and behaviour change and to strengthen existing individual and community networks and improve patient engagement. The intervention will work on the premise that finding out about and enhancing network support can be undertaken by a variety of people (e.g. social network members, members of local community groups, health professionals) in a variety of situations (e.g. at home, work, in public and healthcare settings) (Figure 1). Ensure feedback and continuity between all parties about the utilisation of local resources People with LTCs Dominant focus of interventions Personal communities Professionally-led and individual-centred Abstract knowledge Action planning: short to medium-term Formal narratives of illness management Adherence to medical advice Improving provision and access to healthcare services Identify relevant forms of support within specific areas Health professionals Additional dimensions of interventions Everyday life priorities and network-centred Practical knowledge (how can it be done) Repertoire building: medium to long-term Informal narratives of everyday practices Illness management practices are normalized in everyday life Extending networks: building social capital Building support capabilities in personal communities: getting network members involved Voluntary and community groups Offer training and material resources that would ensure and maximise the use and utilisation of locally available resources Non-health professionals Make information about locally available resources easily accessible to all parties Figure 1 Whole system approach to illness management: extending interventions and building a meta-level support for the utilisation of existing resources. Rogers et al. (2011) 4

3. EU-WISE intervention 3.1 Diabetes as a critical case study As a condition of high and growing prevalence across Europe, diabetes type 2 is recognised as demanding high levels of self-management (including life-style changes and self-monitoring) and continuing self-management education, and has a strong relationship to other multi-morbidities. It has also been demonstrated, through a process of reciprocal translation, that it is possible to map a pattern of response to the self-management of diabetes that is common to people from different countries and health care systems. This makes diabetes type 2 a suitable case study for EU-WISE, as it allows a cross-cultural perspective - there is comparability across the EU-WISE partner countries that facilitates exploration of the role social networks play in self-management support. 3.2 Method of intervention development Figure 2 illustrates the methodology we have adopted in the design of the EU-WISE intervention and the process we will follow as the pilot studies are implemented. Figure 2 Steps in intervention development as an iterative process 5

3.3 EUGENIE intervention EU-WISE - Project No 279081 The EUGENIE intervention developed by EU-WISE has a modular structure with a core intervention and five possible additional components that can be implemented independently of each other (Figure 3). This modular structure allows each partner country to focus on what is most needed and feasible in their context, offering scope for further tailoring. Each partner country will, as a minimum, deliver the core intervention. Figure 3 Summary of EUGENIE Intervention 3.3.1 Core intervention The core intervention consists of four stages. Stage 1: Process of referral Users will be referred to EUGENIE through different channels (e.g. GP practice, secondary care, Voluntary and Community groups, self-referral). Stage 2: Assessment The user will complete a questionnaire on paper or online. The participants will be asked to name the important people in their network, type of relationship and frequency of contact. Stage 3: Simplifying and systematising findings The collected assessment data will be linked to a network type: 1) restricted, 2) family centred, 3) friends centred, 4) diverse. A possible way of linking these broad types to actual configurations of networks is shown in the diagram below (Figure 4). 6

Figure 4 Typology decision tree of personal communities Stage 4: Interpretation and feedback The feedback will contain a short description of the network and its relevant features e.g. what is most typical about people with such networks, who are the key members of the network, possible action to be taken. Feedback will be discussed with the user in the context of the intervention, a separate feedback form will be developed for stakeholders such as GPs, practice nurses, other health professionals. 3.3.2 Added components of the EUGENIE intervention Personal community and individual needs (A) In this component we will use a more in-depth questionnaire to first assess the needs and interests of users and second to link needs and preferences to engagement with network members (who among the network members is relevant for each domain) (see Table 1). 7

Table 1 Needs and interests assessment questionnaire 1 I am interested in doing creative things 2 I would like to know more about social activities 3 I would like to learn more about my health 4 I would like to lose weight 5 I would like to get fitter 6 I would like to learn new skills or complete a course 7 I look after someone e.g. a relative 8 I don t see other people very often 9 I would like to know more about things that will help me remain independent 10 I would like to know more about community transport 11 I would like to help other people Yes or no Who helps you with this or who could you do this with We will add a weighting criteria based on user preference. For example, if questions 4, 5 and 6 have yes answers we can ask respondents to rank those in order of importance. This ranking could also feed into priorities to address in terms of key gaps in support. Links to tailored resources (B) In this component we will use face to face facilitation to match acceptable locally available VCO resources to the user. A facilitator can provide motivation and action planning and undertake the additional work involved in identifying appropriate transport options, for example. The discussion between a user and facilitator about needs, interests, and network support will be followed by a link to existing local resources and referral to potentially acceptable ones that meet the user s needs. Links to tailored resources using an online navigation tool (C) In this component links to tailored resources is the same as in component B, but is delivered with the help of an online tool (an extended and adapted version of the www.plandforyourhealth.org website). 8

Patient-centred information (D) In this component of the intervention we will provide patient-centred information resources. These would vary across EU-WISE countries. The guidebook developed by Dr. Anne Kennedy from the University of Southampton (formerly from the University of Manchester), Diabetes Guidebook: A Handy Guide to Managing Diabetes, is an exemplar and will be used in the UK (Kennedy et al. 2010; Kennedy et al 2004). Inter-organisational networks (E) In this component of the intervention we will use the data collected through the network survey already conducted with local voluntary and community groups and organisations, and GP practices. Our objectives will be to develop measures to assess the structure of organisational networks in each area. This information will be made available to health professionals, commissioners and representatives of voluntary and community groups. The objective is to raise awareness of the nature and structure of inter-organisational relations, the key organisations in different localities and the gaps in the availability of specific types of organisations. 3.3.3 Delivery and Evaluation of the EUGENIE Intervention The core intervention will be delivered in each country. Each country will implement some or all of the additional components, depending on the needs analysis and feasibility for that country. Each country will designate and specify the details of their chosen settings for the study and will undertake delivery and evaluation of 15 cases, five individuals in each setting ideally, but this is open to adaptation depending on which components of the intervention are to be evaluated and what is feasible. The choice of settings will be based on a number of factors including that the population represents a deprived and marginalised community. Cases will be purposively selected for the study (n=15 per country with a range of ages, gender, and network types: isolated; family centred, friends centred, diverse) to try out the intervention in different settings including, for example: a GP practice, local community group, in the home of users. The intervention will be evaluated following delivery. The purpose of the evaluation is to ascertain the feasibility (including acceptability and practical implications) of the EUGENIE intervention. This will be done using qualitative and process research methods, which will include interviews with patients and their care providers, observation of the delivery of the intervention and video-recording of the intervention. 9