Is it time to dump the individualism of self- management support and replaces with a focus on social network involvement which expands with need and saves costs?
By Anne Rogers (University of Southampton)
Minimally Disruptive Medicine is described here in earlier entries to this blog as a service-driven approach to care, co-created with patients (as is the best experience at any service), that makes sense for patients and meets their goals with evidence-based approaches, in a manner consistent with their needs and preferences.
Self-care is often seen as part of that aspiration for co-creation with service providers and has been promoted extensively as part of models encouraging better chronic illness management. The predominant vision for building and enacting self- management capacity has tended to be predicated on the fashioning of peoples’ engagement with this agenda through appeals to normative lifestyles and desirable behaviours.
The literature is replete with references to the focus of self management encouraging the “resourceful patient” as one who should accept responsibility. The whole agenda around self management has been accompanied by a proliferation of terms representing an idealized self-managing individual (“empowered,” “autonomous.” “future,” “expert,” “activated,” “wireless,” “co-producer,” or “flat pack patient”) in the pursuit of confident knowledgable patients practicing self management. In line with this there is an almost exclusive focus on individualistic outcomes such as self-efficacy and patient activation.
This perspective has not only generated a set of interventions which have produced an equivocal evidence base for efficacy, but has masked the power of connections and being linked into networks which provide access to the support that people value and engage with as part of everyday life.
Our recent work in this area at the Universities of Southampton and Manchester indicates that current ways and assumptions of self-management support need to change.
Social network members and dynamics play an important role in the division of labour and the meeting of needs for those living with a long-term condition. We 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.
Our key findings:
- Partners and close family make the highest contributions to supporting self-managment but there is also 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 indicating a degree of substitutability between differently constituted networks and that the level and type of input by different members of a network may change according to circumstances.
- Pets in networks have unique qualities and are not simply substitutes for human relationships in long-term condition management. Pets contribute mostly to managing emotions (emotional work), to enhancing a sense of self identity (biographical work) and to a lesser extent practical tasks (everyday work). Pets mediate relationships for people living with a long-term condition through very weak ties with others in domestic and community settings.
- The amount of work undertaken by ‘weak ties’ is similar to but less than that of stronger ties. Weaker ties appear more durable and less liable to loss over time than stronger ties. ‘Weak ties’ enable the moral positioning of the self-managing ‘self’ and seem to act on the basis of a strong sense of reciprocity. 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.
- Our most recent analysisexplored how people’s social relationships alongside the availability of social capital operate in their local community . Over a one-year period, we found that social involvement with a broad variety of people and groups supports peoples’ own management of their condition and contributes to physical and mental well-being. Evidence of a positive care law was indicated by the fact that Personal networks input was found to expand in accordance with health needs so as to provide assistance in coping. Network support was found to substitute to an extent for formal care and provide substantial savings in traditional service utilisation costs.
We need to recognise the importance of social networks and social involvement and find ways to incorporate such knowledge into future ways of managing long term conditions. Support for self-management which achieves desirable outcomes should be seen less as an individualised set of actions and behaviour and more as a social network phenomenon. Interventions and strategies for chronic illness management require 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.
Learn more about the work of Dr. Rogers’ and her team here: