Social networks, work and network-based resources for the management of long-term conditions: a framework and study protocol for developing self-care support

Background: increasing the effective targeting and promotion of self-care support for long-term conditions requires more of a focus on patient contexts and networks. The aim of this paper is to describe how within a programme of research and implementation, social networks are viewed as being centrally involved in the mobilisation and deployment of resources in the management of a chronic condition. This forms the basis of a novel approach to understanding, designing, and implementing new forms of self-management support.Methods: drawing on evidence syntheses about social networks and capital and the role of information in self-management, we build on four conceptual approaches to inform the design of our research on the implementation of self-care support for people with long-term conditions. Our approach takes into consideration the form and content of social networks, notions of chronic illness work, normalisation process theory (NPT), and the whole systems informing self-management engagement (WISE) approach to self-care support.Discussion: the translation and implementation of a self-care agenda in contemporary health and social context needs to acknowledge and incorporate the resources and networks operating in patients' domestic and social environments and everyday lives. The latter compliments the focus on healthcare settings for developing and delivering self-care support by viewing communities and networks, as well as people suffering from long-term conditions, as a key means of support for managing long-term conditions. By focusing on patient work and social-network provision, our aim is to open up a second frontier in implementation research, to translate knowledge into better chronic illness management, and to shift the emphasis towards support that takes place outside formal health services.<br/

Brief encounters: what do primary care professionals contribute to peoples' self-care support network for long-term conditions? A mixed methods study.

BACKGROUND: Primary care professionals are presumed to play a central role in delivering long-term condition management. However the value of their contribution relative to other sources of support in the life worlds of patients has been less acknowledged. Here we explore the value of primary care professionals in people's personal communities of support for long-term condition management. METHODS: A mixed methods survey with nested qualitative study designed to identify relationships and social network member's (SNM) contributions to the support work of managing a long-term condition conducted in 2010 in the North West of England. Through engagement with a concentric circles diagram three hundred participants identified 2544 network members who contributed to illness management. RESULTS: The results demonstrated how primary care professionals are involved relative to others in ongoing self-care management. Primary care professionals constituted 15.5 % of overall network members involved in chronic illness work. Their contribution was identified as being related to illness specific work providing less in terms of emotional work than close family members or pets and little to everyday work. The qualitative accounts suggested that primary care professionals are valued mainly for access to medication and nurses for informational and monitoring activities. Overall primary care is perceived as providing less input in terms of extended self-management support than the current literature on policy and practice suggests. Thus primary care professionals can be described as providing 'minimally provided support'. This sense of a 'minimally' provided input reinforces limited expectations and value about what primary care professionals can provide in terms of support for long-term condition management. CONCLUSIONS: Primary care was perceived as having an essential but limited role in making a contribution to support work for long-term conditions. This coalesces with evidence of a restricted capacity of primary care to take on the work load of self-management support work. There is a need to prioritise exploring the means by which extended self-care support could be enhanced out-with primary care. Central to this is building a system capable of engaging network capacity to mobilise resources for self-management support from open settings and the broader community

Why less may be more: a mixed methods study of the work and relatedness of 'weak ties' in supporting long-term condition self-management

Background: The distribution of the roles and responsibilities of long-term condition management (LTCM) outside of formal health services implicates a wide set of relationships and activities of involvement. Yet, compared to studies of professional implementation, patient systems of implementation remain under-investigated. The aim of this paper is to explore the work, meaning and function attributed to ‘weaker’ ties relative to other more bonding relationships in order to identify the place of these within a context of systems of support for long-term conditions. Methods: This is a mixed methods survey with nested qualitative study. A total of 300 people from deprived areas in the North West of England with chronic illnesses took part in a survey conducted in 2010 to 2011. A concentric circles diagram was used as a research tool with which participants identified 2,544 network members who contributed to illness management. Notions of ‘work’ were used to describe activities associated with chronic illness and to identify how weaker ties are included and perceived to be involved through social network members (SNM) contributions. Results: The results provide an articulation of how SNMs are substantially involved in weak tie illness management. Weaker ties constituted 16.1% of network membership involved in illness work. The amount of work undertaken was similar but less than that of stronger ties. Weaker ties appeared more durable and less liable to loss over time than stronger ties. The qualitative accounts suggested that weak ties enabled the moral positioning of the self-managing ‘self’ and acted on the basis of a strong sense of reciprocity. Conclusions: Weak ties act as an acceptable bridge between a sense of personal agency and control and the need for external support because it is possible to construct a sense of moral acceptability through reciprocal exchange. Access to weak tie resources needs to be taken into account when considering the ways in which systems of health implementation for chronic illness are designed and delivered

Adapting a social network intervention for use in secondary mental health services using a collaborative approach with service users, carers/supporters and health professionals in the United Kingdom

BackgroundSocial integration, shared decision-making and personalised care are key elements of mental health and social care policy. Although these elements have been shown to improve service user and service-level outcomes, their translation into practice has been inconsistent and social isolation amongst service users persists.AimTo co-adapt, with service users, carers/supporters and health professionals, a web-based social network intervention, GENIE™, for use in secondary mental health services. The intervention is designed to support social activity and preference discussions between mental healthcare professionals and service users as a means of connecting individuals to local resources.MethodsIn Phase 1 (LEARN), we completed two systematic reviews to synthesise the existing evidence relating to the i) effectiveness and ii) the implementation of social network interventions for people with mental health difficulties. We undertook semi-structured interviews with a convenience sample of 15 stakeholders previously involved in the implementation of the intervention in physical healthcare settings. Interviews were also conducted with 5 national key stakeholders in mental health (e.g., policy makers, commissioners, third sector leads) to explore wider implementation issues. In Phase 2 (ADAPT), we worked iteratively with eight service users, nine carers, six professionals/volunteers and our patient and public advisory group. We drew on a framework for experience-based co-design, consisting of a series of stakeholder consultation events, to discuss the use of the social network intervention, in mental health services. Participants also considered factors that could serve as enablers, barriers, and challenges to local implementation.ResultsAcross the stakeholder groups there was broad agreement that the social network intervention had potential to be useful within mental health services. In terms of appropriate and effective implementation, such an intervention was predicted to work best within the care planning process, on discharge from hospital and within early intervention services. There were indications that the social connection mapping and needs assessment components were of most value and feasible to implement which points to the potential utility of a simplified version compared to the one used in this study. The training provided to facilitators was considered to be more important than their profession and there were indications that service users should be offered the opportunity to invite a carer, friend, or family member to join them in the intervention.ConclusionThe GENIE™ intervention has been co-adapted for use in mental health services and a plan for optimal implementation has been co-produced. The next phase of the programme of work is to design and implement a randomised controlled trial to evaluate clinical and cost effectiveness of a simplified version of the intervention

Assessing the effectiveness of social network interventions for adults with a diagnosis of mental health problems: a systematic review and narrative synthesis of impact

Abstract Background Social connections have been linked to the genesis and amelioration of mental health problems and thus have potential therapeutic value. Purpose To identify the current evidence base, assess risk of bias and synthesise findings on the effectiveness of social network interventions for people with mental health problems. Methods Electronic databases (MEDLINE, Embase, PsycINFO, CINAHL, Cochrane Library, Web of Science, Scopus) and grey literature databases were systematically searched from inception to October 2021 using free text syntax combining synonyms for ‘mental health problems’ and ‘social network interventions’. Articles were eligible for inclusion if they reported data from randomised controlled trials on the effectiveness of interventions designed to improve social networks for adults (18+) with mental health problems. Papers were independently reviewed for inclusion with conflicts resolved through consensus. Included papers were quality assessed and data extracted and synthesized narratively. Risk of bias was assessed using the Cochrane Risk of Bias Tool. Results Nine studies randomising 2226 participants were included. Four focused on those with a diagnosis of schizophrenia or psychosis, one on major depressive disorder and four included all types of mental health diagnoses. The current evidence base is of unclear quality. However, interventions which focused on supporting social activities appear to hold the most promise for enhancing social networks. Data on cost-effectiveness and research acceptability were limited, but suggest the potential economic feasibility of and acceptability for evaluating these interventions. Conclusion There is emerging evidence that social network interventions can be effective in improving social connections for people with mental health problems. However, further evaluations with robust methodological approaches are required to inform evidence-based recommendations for health services. </jats:sec

The Contribution of Social Networks to the Health and Self-Management of Patients with Long-Term Conditions: A Longitudinal Study

Evidence for the effectiveness of patient education programmes in changing individual self-management behaviour is equivocal. More distal elements of personal social relationships and the availability of social capital at the community level may be key to the mobilisation of resources needed for long-term condition self-management to be effective. Aim: To determine how the social networks of people with long-term conditions (diabetes and heart disease) are associated with health-related outcomes and changes in outcomes over time. Methods: Patients with chronic heart disease (CHD) or diabetes (n = 300) randomly selected from the disease registers of 19 GP practices in the North West of England. Data on personal social networks collected using a postal questionnaire, alongside face-to-face interviewing. Follow-up at 12 months via postal questionnaire using a self-report grid for network members identified at baseline. Analysis: Multiple regression analysis of relationships between health status, self-management and health economics outcomes, and characteristics of patients’ social networks. Results: Findings indicated that: (1) social involvement with a wider variety of people and groups supports personal self-management and physical and mental well-being; (2) support work undertaken by personal networks expands in accordance with health needs helping people to cope with their condition; (3) network support substitutes for formal care and can produce substantial saving in traditional health service utilisation costs. Health service costs were significantly (p0.01) reduced for patients receiving greater levels of illness work through their networks. Conclusions: Support for self-management which achieves desirable policy outcomes should be construed less as an individualised set of actions and behaviour and more as a social network phenomenon. This study shows the need for a greater focus on harnessing and sustaining the capacity of networks and the importance of social involvement with community groups and resources for producing a more desirable and cost-effective way of supporting long term illness management

Effect of Information and Telephone-Guided Access to Community Support for People with Chronic Kidney Disease: Randomised Controlled Trial

Background: Implementation of self-management support in traditional primary care settings has proved difficult, encouraging the development of alternative models which actively link to community resources. Chronic kidney disease (CKD) is a common condition usually diagnosed in the presence of other co-morbidities. This trial aimed to determine the effectiveness of an intervention to provide information and telephone-guided access to community support versus usual care for patients with stage 3 CKD. Methods and Findings: In a pragmatic, two-arm, patient level randomised controlled trial 436 patients with a diagnosis of stage 3 CKD were recruited from 24 general practices in Greater Manchester. Patients were randomised to intervention (215) or usual care (221). Primary outcome measures were health related quality of life (EQ-5D health questionnaire), blood pressure control, and positive and active engagement in life (heiQ) at 6 months. At 6 months, mean health related quality of life was significantly higher for the intervention group (adjusted mean difference = 0.05; 95% CI = 0.01, 0.08) and blood pressure was controlled for a significantly greater proportion of patients in the intervention group (adjusted odds ratio = 1.85; 95% CI = 1.25, 2.72). Patients did not differ significantly in positive and active engagement in life. The intervention group reported a reduction in costs compared with control. Conclusions: An intervention to provide tailored information and telephone-guided access to community resources was associated with modest but significant improvements in health related quality of life and better maintenance of blood pressure control for patients with stage 3 CKD compared with usual care. However, further research is required to identify the mechanisms of action of the intervention

Diabetes self-management arrangements in Europe: a realist review to facilitate a project implemented in six countries

Background: Self-management of long term conditions can promote quality of life whilst delivering benefits to the financing of health care systems. However, rarely are the meso-level influences, likely to be of direct relevance to these desired outcomes, systematically explored. No specific international guidelines exist suggesting the features of the most appropriate structure and organisation of health care systems within which to situate self-management approaches and practices. This review aimed to identify the quantitative literature with regard to diabetes self-management arrangements currently in place within the health care systems of six countries (The United Kingdom, The Netherlands, Norway, Spain, Bulgaria, and Greece) and explore how these are integrated into the broader health care and welfare systems in each country. Methods: The methodology for a realist review was followed. Publications of interest dating from 2000 to 2013 were identified through appropriate MeSH terms by a systematic search in six bibliographic databases. A search diary was maintained and the studies were assessed for their quality and risk of bias. Results: Following the multi-step search strategy, 56 studies were included in the final review (the majority from the UK) reporting design methods and findings on 21 interventions and programmes for diabetes and chronic disease self-management. Most (11/21, 52%) of the interventions were designed to fit within the context of primary care. The majority (11/21, 52%) highlighted behavioural change as an important goal. Finally, some (5/21, 24%) referred explicitly to Internet-based tools. Conclusions: This review is based on results which are derived from a total of at least 5,500 individuals residing in the six participating countries. It indicates a policy shift towards patient-centred self-management of diabetes in a primary care context. The professional role of diabetes specialist nurses, the need for multidisciplinary approaches and a focus on patient education emerge as fundamental principles in the design of relevant programmes. Socio-economic circumstances are relevant to the capacity to self-manage and suggest that any gains and progress will be hard to maintain during economic austerity. This realist review should be interpreted within the wider context of a whole systems approach regarding self-care support and chronic illness management