Ivaylo Vassilev

Social networks, social capital and chronic illness self-management: a realist review

Background: Existing literature on the design of interventions and health policy about self-management have tended to focus on individual-centred definitions of self-care and there is growing recognition of the need to extend consideration beyond individual factors, which determine self-care, to examine wider influences such as the health service, the family and the wider social context. Aims: To explore the theoretical and empirical links between social networks, social capital and the self-care practices associated with chronic illness work and management in the context of people’s everyday lives. Method: A realist review method was used to search and appraise relevant quantitative and qualitative literature. Findings: The review findings indicate that social networks play an important part in the management of long-term conditions. We found that social networks tend to be defined narrowly and are primarily used as a way of acknowledging the significance of context. There is insufficient discussion in the literature of the specific types of networks that support or undermine self-care as well as an understanding of the processes involved. This necessitates shifting the emphasis of self-care towards community and network-centred approaches, which may also prove more appropriate for engaging people in socially and economically deprived contexts.

Social networks, the 'work' and work force of chronic illness self-management: a survey analysis of personal communities.

Self-management support forms a central aspect of chronic Illness management nationally and globally. Evidence for the success of self-management support has mainly focussed on individually-centred outcomes of behavioural change. While it is recognised that social network members play an important role there is currently a gap in knowledge regarding who provides what type of support and under what circumstances. This is relevant for understanding the division of labour and the meeting of needs for those living with a long-term condition. We therefore took a network approach to explore self-management support conceptualising it as types of illness ‘work’ undertaken within peoples’ social networks. 300 people from deprived areas and with chronic illnesses took part in a survey conducted in 2010 in the North West of England. A concentric circles diagram was used as a research tool with which participants identified 2,544 network members who contributed to illness management. The results provide an articulation of how social network members are substantially involved in illness management. Whilst partners and close family make the highest contributions there is evidence of inputs from a wide range of relationships. Network member characteristics (type of relationship, proximity, frequency of contact) impact on the amount of illness work undertaken in peoples’ networks. In networks with ‘no partner’ other people tend to contribute more in the way of illness related work than in networks with a partner. This indicates a degree of substitutability between differently constituted networks, and that the level and type of input by different members of a network might change according to circumstances. A network perspective offers an opportunity to redress the balance of an exclusively individual focus on self-management because it addresses the broader set of contributions and resources available to people in need of chronic illness management and support.

The influence of social networks on self-management support: a metasynthesis.

BackgroundThere is increasing recognition that chronic illness management (CIM) is not just an individual but a collective process where social networks can potentially make a considerable contribution to improving health outcomes for people with chronic illness. However, the mechanisms (processes, activities) taking place within social networks are insufficiently understood. The aim of this review was to focus on identifying the mechanisms linking social networks with CIM. Here we consider network mechanisms as located within a broader social context that shapes practices, behaviours, and the multiplicity of functions and roles that network members fulfil.MethodsA systematic search of qualitative studies was undertaken on Medline, Embase, and Web for papers published between 1st January 2002 and 1st December 2013. Eligible for inclusion were studies dealing with diabetes, and with conditions or health behaviours relevant for diabetes management; and studies exploring the relationship between social networks, self-management, and deprivation. 25 papers met the inclusion criteria. A qualitative metasynthesis was undertaken and the review followed a line of argument synthesis.ResultsThe main themes identified were: 1) sharing knowledge and experiences in a personal community; 2) accessing and mediation of resources; 3) self-management support requires awareness of and ability to deal with network relationships. These translated into line of argument synthesis in which three network mechanisms were identified. These were network navigation (identifying and connecting with relevant existing resources in a network), negotiation within networks (re-shaping relationships, roles, expectations, means of engagement and communication between network members), and collective efficacy (developing a shared perception and capacity to successfully perform behaviour through shared effort, beliefs, influence, perseverance, and objectives). These network mechanisms bring to the fore the close interdependence between social and psychological processes in CIM, and the intertwining of practical and moral dilemmas in identifying, offering, accepting, and rejecting support.ConclusionsCIM policy and interventions could be extended towards: raising awareness about the structure and organisation of personal communities; building individual and network capacity for navigating and negotiating relationships and CIM environments; maximising the possibilities for social engagement as a way of increasing the effectiveness of individual and network efforts for CIM.

Assessing the implementability of telehealth interventions for self-management support: a realist review

BackgroundThere is a substantial and continually growing literature on the effectiveness and implementation of discrete telehealth interventions for health condition management. However, it is difficult to predict which technologies are likely to work and be used in practice. In this context, identifying the core mechanisms associated with successful telehealth implementation is relevant to consolidating the likely elements for ensuring a priori optimal design and deployment of telehealth interventions for supporting patients with long-term conditions (LTCs).MethodsWe adopted a two-stage realist synthesis approach to identify the core mechanisms underpinning telehealth interventions. In the second stage of the review, we tested inductively and refined our understanding of the mechanisms. We reviewed qualitative papers focused on COPD, heart failure, diabetes, and behaviours and complications associated with these conditions. The review included 15 papers published 2009 to 2014.ResultsThree concepts were identified, which suggested how telehealth worked to engage and support health-related work. Whether or not and how a telehealth intervention enables or limits the possibility for relationships with professionals and/or peers. Telehealth has the potential to reshape and extend existing relationships, acting as a partial substitute for the role of health professionals. The second concept is fit: successful telehealth interventions are those that can be well integrated into everyday life and health care routines and the need to be easy to use, compatible with patients’ existing environment, skills, and capacity, and that do not significantly disrupt patients’ lives and routines. The third concept is visibility: visualisation of symptoms and feedback has the capacity to improve knowledge, motivation, and a sense of empowerment; engage network members; and reinforce positive behaviour change, prompts for action and surveillance.ConclusionsUpfront consideration should be given to the mechanisms that are most likely to ensure the successful development and implementation of telehealth interventions. These include considerations about whether and how the telehealth intervention enables or limits the possibility for relationships with professionals and peers, how it fits with existing environment and capacities to self-manage, and visibility-enabling-enhanced awareness to self and others.

Linking people with long-term health conditions to healthy community activities: development of Patient-Led Assessment for Network Support (PLANS).

To combine insights from service users with long‐term conditions (LTCs) to assist the development of a community referral intervention designed to promote engagement and improve access to health‐relevant resources.

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

BackgroundThe 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.MethodsThis 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.ResultsThe 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.ConclusionsWeak 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.

Risk, trust and the myth of mental health services

Background: Strictly “mental health” should, as its name suggests, be about health, yet there is now a global discourse about “mental health” which actually alludes mainly to the clinical, organizational and legal aspects of managing mental disorder. Indeed, “mental health” law deals with the conditions under which people diagnosed with mental disorder can be lawfully compelled to accept treatment. This paradoxical use of language requires further examination. Aims: The paper aims to problematize the taken for granted notion of “mental health services”. Method: It draws upon general sociological work on “risk” and “trust”. The trustworthiness of ordinary language accounts and professional codifications are considered before examining the sociological implications of the controversy about the abuse of psychiatry. The risks to and from patients in routine mental health work, and the betrayal of trust as both a normal part of care and its corruption in mental health work are outlined. Conclusions: The paper concludes that “mental health services” are a myth in as much as they are mostly concerned with mental disorder and control (at least to the bulk of identified patients which form the focus of their activity).

Creature comforts: personal communities, pets and the work of managing a long-term condition.

Objectives: To explore in the context of peoples’ personal social networks, the contribution that pets make to ‘the work’ associated with the management of long-term conditions. Method: Mixed methods survey with nested parallel qualitative study; 300 participants were drawn from diabetes and chronic heart disease registers of General Practices across Greater Manchester in the North West of England. Notions of ‘work’ were used to describe the illness and everyday activities associated with chronic illness. Results: Nineteen percent of participants identified at least one pet within their network. Pets contributed mostly to managing emotions (emotional work), to enhancing a sense of self identity (biographical work) and to a lesser extent practical tasks (everyday work). There were indicators that pets mediated relationships for people living with a long-term condition through very weak ties with others in domestic and community settings. Conclusion: The findings suggest that pets have unique qualities and are not simply substitutes for human relationships in long-term condition management. The study has potential implications for furthering a social contextual analysis of chronic illness, the understanding of relationships, and the meaning and the role of companion animals in long-term condition management.

The role of information in supporting self-care in vascular conditions: a conceptual and empirical review

Self-care has the potential to make a significant contribution to vascular conditions, but engagement with self-care support has been limited. Lack of relevant information is highlighted by patients and policy-makers as an important barrier to effective self-care, and information provides a potentially efficient platform for changing behaviour. However, work within the social sciences has generally seen information as a necessary but insufficient driver of health behaviours. Furthermore, some groups (such as the socially disadvantaged) are expected to be less amenable to information interventions. We conducted an integrated conceptual and empirical review on information-based interventions for people with vascular disease (diabetes, heart disease and kidney disease). We reviewed conceptual and empirical work concerning the role and impact of information in self-care support to generate an explanatory framework to determine why information was effective or ineffective in encouraging self-care in patients with vascular conditions. This involved mapping relevant theories and models linking information and self-care. We also explored published systematic reviews of educational interventions in diabetes, coronary heart disease and chronic kidney disease to examine the role of information and evidence concerning its effectiveness and impact in different patient populations. The conceptual review identified variation among information interventions in terms of type, function, and their relationship to behaviour change techniques and psychological mediators of behaviour change. Key moderators of the effect of information included types of disorder, and patient capacity and resources. A wealth of educational interventions exists for diabetes and heart conditions, but the precise components of these interventions that are effective are difficult to identify. There is little evidence concerning optimal ways of tailoring interventions for socially disadvantaged groups other than ethnic minorities. A focus on printed information may not provide access to effective methods of information delivery (e.g. tailored information, use of narratives and user generated content). Developing a framework for the effective use of information needs to take account the full range of the factors identified.

Social status and living with a chronic illness: an exploration of assessment and meaning attributed to work and employment.

Background Traditional measures of social status are predicated on position in the labour market. There has been less attention directed to the meanings of social position for people with a long-term condition whose relationship to employment is precarious. Previous research has demonstrated that the MacArthur scale is capable of capturing contextualised aspects of social status, which makes it a useful tool for exploring changes in meaning. Aims The paper explores the meanings and experiences of social status of people living with a long-term condition with particular reference to employment status. Methods A sample of 300 participants was drawn from diabetes and chronic heart disease registers of General Practices in North West England. A cross-sectional survey with nested qualitative interviews was used in collecting and analysing the data. Findings Having financial independence and participating in valued activities are more important for people with chronic illness than power and status mediated through the labour market. Income and the lack and loss of employment were given a central role in respondents’ narratives reflecting the absence of acceptable alternative routes through which social status for those with a long-term condition can realistically be rebuilt outside of participation in the labour market. Conclusion Social participation, where people with chronic illness feel valued and of tangible utility to other people, might offer some opportunities for rebuilding social status outside the labour market. Chronic illness management interventions need to focus on improving people’s engagement with such activities.