There is recognition that person-centred self-management needs to emphasise what people with long-term conditions value and how they engage with members of their networks in everyday settings.
Earlier studies indicated that the Genie* intervention can support this process. This is by for example deepening existing support and adding new groups and activities (e.g. walking groups), tools (e.g. pedometers), and online resources (e.g. Facebook).
*Genie™ is an online tool used to support people to manage a long term condition. It connects people to the resources surrounding them in their community allowing them to take part in activities or utilise support to maintain and manage their health and wellbeing.
It was created at the University of Southampton and funded by NIHR CLAHRC Wessex in partnership with My Life a Full Life and The Health Foundation.
In a study conducted by the Genie research team (pictured) on the Isle of Wight we wanted to develop a better understanding of the processes through which such changes occur. We found two pathways of engagement with networks following the Genie intervention.
The first pathway, mobilisation of network capabilities, is a gradual process where potentially relevant changes are further specified. This could be through fore-fronting immediate concerns, and by negotiating and activating acceptable means for achieving them.
“Yes, I still want to join the W.I. which is one of the things that I want to do but it will be a few weeks until I feel well enough to walk up there because that’s the only thing, […] that is my arthritis and it would be too expensive to go back and forth on the bus because we’re talking about a £5 every time I went out which I know doesn’t a lot to normal people but it is to me. […] I was hoping possibly if I made contact with people that were within these clubs there may well then be somebody that lives locally to me or comes by this way that I could cheekily cadge a lift off, or whatever, but I won’t know that until I actually join.” (Participant)
It could also involve a process where people start prioritising what network members really do than their subjective value as for example children or close friends. Changes also involved building and rehearsing new ways of justifying why it may be good and right for things to change or stay the same.
In the second pathway Genie acts as a nudge, so adopting changes requires less reflection, and is activated through the availability of a potential fit between individual, network and environmental conditions of readiness. For example, engagement with network members that may appear unimportant (such as neighbours or acquaintances in community groups) could potentially act as a nudge towards making changes by providing a missing link. Access to such network members may make everything else fit by for example acting as a companion for walks, but where there is already easy access to a safe and walkable area, and past positive experience of going for walks.
“…through work they were giving them away free and you just log on but it’s only, it’s not like a group chat or anything but you log your steps on every day and every month there is, in fact [colleague] that I work with won two Bestival tickets through it just purely from logging on and doing the steps every day. You can see what others in our area are doing […] you can see how you are in the table.” (Participant)
Our findings suggest that it is the first pathway that might be better suited to the circumstances and needs of people who have limited resources, smaller networks and lower levels of community links. Effective support for such groups would also require the availability of local services that have stable funding structure and are entirely focused on the evolving user preferences and needs over the long-term. In contrast, linking users with small more fragile organisations brings with it support which is less likely to be sustainable over time and also creates new relational work for users which might also be unsustainable.
The Genie intervention appears to be effective in bridging the gap between cognitive engagement with networks and making potential changes, and its activation in the context of people’s everyday life. Its impact in activating networks and supporting behavior change is likely to be enhanced by the availability of local resources enabling people to live well.
Ivaylo Vassilev is Senior Research Fellow within Health Sciences at the University of Southampton. Ivo’s background is in sociology and his current research is focused on the political economy of chronic illness and using networks methodologies for the study of chronic illness management. See his Toronto conference presentation here ISA Patient systems and networks