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

ABSTRACT: 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.

SUBMITTER: Vassilev I

PROVIDER: S-EPMC3615067 | biostudies-literature | 2013

REPOSITORIES: biostudies-literature

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

Vassilev Ivaylo I Rogers Anne A Blickem Christian C Brooks Helen H Kapadia Dharmi D Kennedy Anne A Sanders Caroline C Kirk Sue S Reeves David D

PloS one 20130402 4

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 f ...[more]

PMID: 23565162

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Project description: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.

Project description:An adequate understanding of the acculturation processes affecting immigrants and their descendants involves ascertaining the dynamic interplay between the way these individuals manage their multiple (and sometimes conflictual) cultural value systems and identifications and possible changes in their social networks. To fill this gap, the present research examines how key acculturation variables (e.g., strength of ethnic/host cultural identifications, bicultural identity integration or BII) relate to the composition and structure of bicultural individuals' personal social networks. In Study 1, we relied on a generationally and culturally diverse community sample of 123 Latinos residing in the US. Participants nominated eight individuals (i.e., alters) from their habitual social networks and across two relational domains: friendships and colleagues. Results indicated that the interconnection of same ethnicity alters across different relationship domains is linked to cultural identifications, while the amount of coethnic and host individuals in the network is not. In particular, higher interconnection between Latino friends and colleagues was linked to lower levels of U.S.Conversely, the interconnection of non-Latino friends and colleagues was associated with lower levels of Latino identification. This pattern of results suggests that the relational context for each type of cultural identification works in a subtractive and inverse manner. Further, time spent in the US was linked to both Latino and U.S. cultural identifications, but this relationship was moderated by the level of BII. Specifically, the association between time in the US and strength of both cultural identities was stronger for individuals reporting low levels of BII. Taking the findings from Study 1 as departure point, Study 2 used an agent-based model data simulation approach to explore the dynamic ways in which the content and the structure of an immigrant's social network might matter over time in predicting three possible identity patterns: coexisting cultural identifications, conflicting cultural identifications, and a mixture of the two. These simulations allowed us to detect network constellations, which lead to identification or disidentification with both cultures. We showed that distinct patterns of social relations do not lead to identity outcomes in a deterministic fashion, but that often many different outcomes are probable.

Project description:Note: Data Use Restrictions: <ul> <li>The data must only be used for genetic research projects solely in the area of health-related social-network research.</li> </ul> This study compiles detailed information on family and social ties linked to participants in the offspring cohort of the Framingham Heart Study. The investigators took computerized information from self-report data used by the FHS for over 30 years to facilitate health exam scheduling. These tracking sheets asked participants to identify people close to them, which were assumed by the investigators to indicate a social tie. Individuals are listed as "egos" (if the ties are from their perspective) and/or "alters" (if they are linked as a friend or family members to one of the other participants). All egos were FHS offspring participants while alters could be FHS participants in any cohort or non-participants. This information was combined with internal FHS pedigree data on family ties to list family member alters (as well as the nature of their relationship). The resultant dataset therefore includes each ego-alter tie, the nature of their relationship and the start and end dates for their ties for each of seven waves for the offspring study. Due to privacy concerns, all exam dates for individuals are listed relative to the initial FHS exam date. The study investigators chose a random, confidential date, to which all initial exam dates are linked (by number of months from random date to initial exam date). With this information, researchers can have access to the temporal relationships among participants' exam dates while remaining unaware of the actual exam dates for individual participants. During each clinic exam cycle, the participants undergo a detailed examination including physical examination, medical history, laboratory testing, and electrocardiogram. Over the years, other tests (that may not be performed at every exam cycle) have included pulmonary function, lifestyle, physical function, cognitive function questionnaires, and various noninvasive cardiovascular tests including echocardiograms. This study involves phenotypic data from these exams including (when available) basic body measurements (height, weight, blood pressure), laboratory values (blood sugar levels, LDL levels), information on smoking and alcohol use, and tests of depression and cognitive functioning. Important links to apply for individual-level data <ol> <li><a href="http://dbgap.ncbi.nlm.nih.gov/aa/wga.cgi?view_pdf&stacc=phs000153.v3.p3" target="_blank">Data Use Certification Requirements (DUC)</a></li> <li><a href="GetPdf.cgi?id=phd001183.1" target="_blank">Instructions to Request Authorized Access</a></li> <li><a href="http://view.ncbi.nlm.nih.gov/dbgap-controlled" target="_blank">Apply here for controlled access to individual level data</a></li> <li><a href="GetPdf.cgi?id=phd000317" target="_blank">Participant Protection Policy FAQ</a></li> </ol> In 1948, researchers recruited men and women from the town of Framingham, Massachusetts, beginning the first round of extensive physical examinations and lifestyle interviews that would later be analyzed for common patterns related to CVD development. Initially, the Framingham Heart Study enrolled 5,209 men and women from the Framingham area who were between the ages of 28 and 62 years. Beginning in 1971, the Framingham Heart Study enrolled 5,124 men and women, who were either offspring of the original cohort or spouses of those offspring. In 2002, 4,095 third generation participants (men and women) were enrolled.

Dataset Information

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

Publications

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

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