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Knowing you’re not alone: Understanding peer support for stroke survivors

Stroke Association Voluntary Groups (SAVGs) are volunteer-led, peer support groups based in local communities across the UK. They offer a range of activities for stroke survivors and carers such as exercise, art, music, gardening, talks and trips out. Peer support is a core part of the groups and 7 in every 10 volunteers who run groups are themselves stroke survivors. Through the support they offer, these groups aim to contribute to the following outcomes for stroke survivors: reduced social isolation, improved mental wellbeing, increased knowledge and self-management, increased likelihood of accessing support and improved confidence.

The Nuffield Trust was selected to independently evaluate SAVGs and to assess the value and impact of the groups for their beneficiaries. Our evaluation used a mixedmethods approach, which included a questionnaire of stroke survivors and carers to capture self-reported measures of health and wellbeing, interviews with stroke survivors and carers, and interviews and focus groups with staff and volunteers. The evaluation drew on the experiences and views of more than 200 stroke survivors and 100 carers from 30 local groups, as well as 20 Stroke Association staff and volunteers. The evaluation began in January 2015 and ran for 18 months. Below we highlight the key findings, observations and reflections from this evaluation.

• In the UK, there are 130 SAVGs run by more than 700 volunteers. Stroke survivors can join a SAVG at any point after their stroke (in most instances people join around 12 months after stroke) and remain a member for as long as they want to. SAVGs are supported by the Stroke Association, but they are responsible for raising funds to run the group, usually through local grants or fundraising.

• There are common patterns in the way that local groups are structured (usually supported by a group of volunteers with different formal roles and responsibilities) and in the types of support that they offer. But the SAVGs do differ from one another, and are often shaped by the needs and preferences of group members and
available funding.

• Group members were positive about being part of a group. They overwhelmingly felt it to be an essential part of their life after stroke and a source of ongoing support. Stroke survivors reported that joining a SAVG had had a positive impact on their social isolation and that the groups provided them with a way to access social networks and make friends. In interviews, social support was often given as a stroke survivor’s primary reason for attending a SAVG. In addition, a number of stroke survivors reported having no other opportunity to regularly leave their home and interact with others.

• Previous research has demonstrated the negative impact loneliness and social isolation can have through its effect on people’s wellbeing and quality of life. Therefore, our findings suggest that the social networks and interactions the groups offer is important for stroke survivors’ broader recovery and wellbeing.

• Stroke survivors felt that their confidence was improved through participation in the SAVGs. Those interviewed reported that the groups provided them with many practical opportunities to improve and build their confidence and that the overall
atmosphere and culture of the groups also contributed.

• One of the biggest challenges stroke survivors were facing was changes with mental wellbeing and in particular feeling more emotional. Generally, people felt that
attending a group had had a positive impact on their mental wellbeing. Some identified that the SAVG provided a space for people to tackle the ongoing ‘ups and downs’ that followed a stroke – in particular the heightened emotions experienced by many.

• Self-management was a difficult topic to discuss with stroke survivors in interviews; there was confusion around its meaning and in how improved self-management related to the groups. Stroke survivors reported that SAVGs provided ways for some to regain practical skills or functioning through learning and activities. Most commonly, the group had helped people with their writing, computer skills and with regaining their speech. A couple of interviewees also mentioned that the groups had helped them understand more about stroke.

• Although people generally felt supported by the groups, they didn’t necessarily see the group as a way to access other types of support or services. However, this was challenging to capture in the interviews as people didn’t know or couldn’t remember who had provided them with support since their stroke.

• Carers felt positively about the groups, and were clear about the benefits the group had for themselves and those they cared for. Carers described improvements in mental wellbeing as one of their main reasons for accessing the group. In particular, they appreciated the friendly atmosphere and seeing success stories – people who had recovered from stroke – which gave carers a ‘morale boost’ regarding their own situation and future. The local networks and communities formed within groups were also appreciated by carers as a source of practical and emotional support when transitioning away from statutory services.

• Prior to this study, little research had been undertaken to understand the impact of peer support for stroke survivors. We found that, overwhelmingly, stroke survivors felt peer support had a positive benefit for them and they felt it made a real difference. Stroke survivors and carers found it reassuring and supportive to be with people who were going through similar challenges. It gave stroke survivors a more positive impression of their own recovery and also provided them with an opportunity to support others. We also found that there were times when people felt that peer support was not appropriate. This was identified as being mainly due to timing. In particular, in the immediate aftermath of a stroke it could be too soon for stroke survivors to attend a support group if they were experiencing strong emotions and anger.

• Staff and volunteers running and supporting SAVGs were facing numerous challenges in their roles. These were readily acknowledged and included: welcoming
new group members, recruiting new group members, recruiting volunteers, training volunteers, managing pressures on lead volunteers, maintaining good relationships, providing adequate staff resource, sourcing funding and supporting the varying needs of stroke survivors. In addition, we observed that lead volunteers and volunteers in other formal roles were under great pressure to run the groups effectively and this was a key concern for the future of the groups. There was concern about how sustainable these roles could be without shared responsibilities and adequate staff support.

• Through a self-report questionnaire we attempted to capture measures of the following outcomes: reduced social isolation for stroke survivors, improved mental wellbeing for stroke survivors, increased self-management for stroke survivors and improved quality of life for carers. We were unable to find any statistically significant changes over a three-month time period in any of the outcome measures for members of the SAVGs.

• This may have been because, for many stroke survivors attending SAVGs it had been several years since their stroke and they had plateaued in their recovery. Improvements in these outcomes were likely to have been seen sooner after their stroke and/or after joining the group. In addition, since the groups offer long-term support, leaving more time between questionnaires may have better captured the impact of groups.

• Despite not being able to detect significant changes in outcome measures over time, we still feel there is great value in using patient-reported outcome measures for groups of this nature. If these were to be used to capture the value of similar groups in future work, we would suggest:

  • stroke survivors complete and track their own outcome measures
  • capturing new group members as early as possible after joining a group, allowing more time between outcome measurements (such as 6 or 12 months)
  • groups to focus on a reduced number of complete outcome measures.