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

Abstract

BackgroundIncreasing 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.MethodsDrawing 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.DiscussionThe 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.

Improving community health networks for people with severe mental illness: a case study investigation

“…This work emphasised the importance of incorporating resources and social context within individuals' lives into self-care plans. 103 Networks are not simply sources of support but are integral to personal identity; individuals can have different identities in different settings, and access to a wider range of settings can facilitate the development of new identities central to the recovery process. 104,105 In contrast, having fewer identities, specifically the role of a sick person or being defined by one's mental health only, can be damaging.…”

“…This was the approach also being advocated in the treatment of long-term conditions, recognising the central role of social support in recovery. 102,103 Employment was an indicator of access to resources, as shown in the RGUK regression model. Employment can be beneficial because it facilitates access to social interaction and provides structure, a sense of identity, self-esteem and improved finances, 132 while gaining employment can improve mental well-being and social inclusion, 133 but people with mental illness face discriminatory barriers in access to employment.…”

Adaptation Experience and Social Support Network of Adolescent Cancer Survivors

“…The growth of patient and public involvement and the rise in the importance attributed to self-management for longterm conditions a supports a shift in analytical focus to patient systems of implementation, which have the potential to act as a complement or alternative to traditional health service provision. The rationale for such a focus is reinforced with recognition that patients with long-term conditions spend relatively little time in contact with health professionals in comparison to the activities needed to manage long-term conditions in everyday life [3]. Mapping the configuration of patients' personal communities of support is relevant for understanding who does what, how and why for long-term condition management.…”

“…The equivocal evidence of widely advocated programmes of self-management support (SMS) based on enhancing individual capacities to acquire skills and knowledge to enhance chronic illness management [4,5] has led to suggestions that increasing effective targeting and implementation of SMS requires a focus on connections to resources that might enable access and mobilisation of resources and opportunities for SM in domestic and community settings [3,4,6]. Social network analysis (SNA), which is concerned with the structural arrangements and content of social relations and positions (a set of actors linked into networks), has potential for viewing the chronic illness management (CIM) work force as a system of networked support for personal management [7][8][9].…”

Living with HIV in regional Queensland: social ties, care and support in managing a long-term complex chronic illness

“…Within the chronic illness literature, there is emerging recognition that it is the broader social network of the person [82][83][84][85] that needs to be examined in order to understand the ways s/he manages their chronic condition [85]. It is because, similar to other areas of life (such as finding a job or managing life in a new country as an immigrant) [86], the various resources required to manage one's longterm condition, are being drawn and exchanged within one's social network.…”