Peer support for stroke: what have we learned?

The Stroke Association's Liz Roberts examines what has been learned from the Nuffield Trust's evaluation of their voluntary groups, and what it might for the future of community peer support in stroke care.

Blog post

Published: 28/09/2016

Stroke Association Voluntary Groups (SAVGs) are volunteer-led, peer support groups designed to reduce social isolation and improve mental wellbeing for stroke survivors and carers. They are based in communities across the UK and involve a range of activities including exercise, art, music, gardening, talks and trips out. The Nuffield Trust was selected to independently evaluate SAVGs and to assess the value and impact of the groups for those that use them. In this blog, Liz Roberts, who led the peer support project on behalf of the Stroke Association, outlines the results of the study and what it might mean for the future of peer support.

Fantastic leaps forward in hospital care mean that more and more people now survive following a stroke. However, stroke is the leading cause of adult disability and huge numbers of people are still left to deal with their recovery and readjust to their life after stroke following initial hospital care.

This is where our network of long-term peer support groups comes in. They enable stroke survivors to see the light at the end of the tunnel and to socialise with others in a similar situation. They also provide the opportunity for those unable to return to work to learn new skills, contribute to society, be a part of their local community and use their experience to help others on the journey to accepting life after stroke.

Our voluntary groups

Our SAVG network was first developed back in 2007 and, since then, the project has grown considerably and gone from strength to strength. Stroke survivors are at the heart of our model: 72 per cent of the volunteers who lead the peer support groups are stroke survivors who have been on their own journey of recovery. They are now giving their time, empathy and knowledge to help others going through that journey in the long term.

Over the last two years, the Stroke Association has been on quite a journey of its own. We received our first piece of funding for our peer support programme. The money helped us to expand and pilot different types of peer support groups, create physical resources, develop online learning modules, and deliver face-to-face training.

Alongside this, the funding also enabled us to commission our first evaluation of the groups – conducted externally by the Nuffield Trust. For the first time, this allowed us not only to look into the impact of the groups and the processes involved in setting them up and running them, but also to highlight the importance of this area of work.

In doing so, we have learnt a lot about how to do this at scale – and also how not to!

So what do we know?

There are 130 SAVGs in the UK, supported by more than 700 volunteers. While each group differs slightly based on their funding and the preferences of their members, there are some commonalities that emerged from the study.

We know that both stroke survivors and their carers gained an enormous amount of value from being in the groups.

Stroke survivors reported feeling less isolated, since the groups gave them an outlet to make new friends, and many told researchers that they had no other chances to interact with other people. Given the evidence around the negative impact of loneliness on quality of life, the social networks offered by the groups are vital for stroke survivors’ wider recovery and wellbeing.

The groups also provided many ways for survivors to regain practical skills such as writing, computer skills and speech. As a result, many stroke survivors felt more confident from participation in the SAVGs, and felt that the groups generally had a positive impact on their mental wellbeing.

Carers also benefited from the SAVGs. They appreciated the friendly atmosphere, and hearing the ‘success stories’ of those who had recovered from stroke gave carers a vital morale boost regarding their own future.

What happens next for peer support?

Prior to this study, very little research had been undertaken to understand the impact of peer support for stroke survivors. The insights gathered from the evaluation will help us not only to extend what we’re doing, but also to enable others to replicate our work.

For instance, there is now a lot of focus and excitement about us and this area of work externally from organisations like National Voices, and internationally from Peers for Progress and other stroke charities. Indeed, we have now been funded to continue to scale up this work through the 'Accelerating Ideas' funding programme under Big Lottery and Nesta. This is a reassuring sign that we are going in the right direction.

Suggested citation

Roberts L (2016) 'Peer support for stroke: what have we learned?' Nuffield Trust comment, 28 September 2016.