Online health groups as a support for decision-making and behaviour change

By Liz Sillence; Psychology and Communication Technology  (PaCT) Lab, Northumbria University

Whilst online health groups have a long history of offering a place for social and emotional support we are starting to recognise that these communities are providing a key role in supporting decision-making and in some cases affecting behaviour change.

In a recent study, a colleague and I examined the different ways in which engagement with an online support group influenced decision-making around health (Sillence & Bussey, in press).

Our participants described several different ways in which reading about peers’ experiences and importantly interacting with other people online helped with decision-making. We can characterise this ‘help’ in three main ways:

Firstly, the online support groups provide ‘role models and recipe cards’. Role models, people who have already made the same decision or tried the new behaviour, can provide our participants with experiential, insider information. Others provide recipe cards – step-by-step information about how to engage in an activity or try a new behaviour.

Secondly, the interactive nature of these groups allows people to interrogate the experiences of others and to weigh up the answers in light of their own options and preferences to find an approach, decision or behaviour that feels right for them.

Thirdly, the groups help people feel better about the decisions they have already made and the changes they’ve undertaken. They offer opportunities for positive feedback and reinforcement.

Although not always encouraged by healthcare professionals these online groups do appear to be supporting decision-making and behaviour change around treatments, testing and use of services but importantly occur organically over time.  What can we take from these natural communities when thinking about the potential role of peer support groups within intervention studies?

Well, speaking to people about their online groups we observed that all communities were different – there was no single easy to replicate model. The ethos of each was dependent on the specific health topic and the unique makeup of its membership. That said, the presence of a good, experienced moderator was important in managing the flow of contributions and providing expert domain knowledge. The size of the community was also key. Groups must contain sufficient ‘role models and recipe cards’ to allow people to find voices and experiences that resonate with their own.

Going forward we also need to recognise that online support groups are seldom used in isolation with respect to health decision-making and as such we need to think of ways of improving the integration of online resources with those offered by healthcare professionals.

Finally, online support groups are not for everyone and as such this behaviour change context will not work for all. But for an increasing number of people sharing experiences with peers is becoming a key element of their health decision-making and this resource may well offer insights into planned interventions.

References:

Sillence, E. & Bussey, L. (in press). Changing hospitals, choosing chemotherapy and deciding you’ve made the right choice: Understanding the role of online support groups in different health decision-making activities. Patient Education and Counseling.

BIO: Liz Sillence is a member of PaCT Lab, based in the psychology department at Northumbria University. Her research centres on trust, decision making and advice exchange online.

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