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It supports a network of more than 130 Stroke Association Voluntary Groups (SAVGs) - volunteer-led, peer support groups - based in local communities across the UK. Through the support they offer, these groups aim to reduce social isolation, improve mental wellbeing, improve self-management and help stroke survivors and carers have a better quality of life after stroke.

The Stroke Association was awarded £236,065 (including £16,156 for evaluation) in order to create nearly 40 new groups, supporting more than 900 stroke survivors and their carers and mobilising approximately 300 volunteers. The project also involved the creation of resources and training required to help over 80 existing groups across England provide quality peer support and be more sustainable. The funding and evidence generated through the grant has also helped the team successfully secure additional grant funding from the Big Lottery Fund to continue the growth of their peer support network across the UK over the next five years. Read the full impact evaluation.

About the evaluation

Aim:

In their evaluation, the Stroke Association set out to understand more about their voluntary groups (SAVGs). The evaluation aimed to build a picture of the impact and value these groups have for stroke survivors and carers, whilst understanding how the groups are delivered and supported by volunteers and staff. The evaluation also looked at the challenges of delivering peer support through the SAVG groups.

Evaluator:

The Nuffield Trust

Key findings:

Surveys filled in by stroke survivors over a three-month period showed little to no positive change in the outcomes being measured. However, this was likely because most of these stroke survivors had already been attending their voluntary groups for some time when they completed their baseline survey, and so the evaluation wasn’t able to capture the initial impact of joining a group.

Indeed, interviews painted a more positive picture. They indicated the following:

  • Both stroke survivors and carers can benefit from stroke peer support groups and groups appear to offer an important more ‘natural’ environment for recovery - where informally-delivered mutual support, enjoyment and laughter can all contribute to recovery.
  • Support between peers is at the core of what makes groups work –people find being with others who share their experience and can validate it, reassuring, supportive, helpful and encouraging. Peer support groups can create safe and non-judgemental spaces to make sense of and adjust to life after stroke.
  • Peer support provides people with role models who can help them feel encouraged about their own potential recovery and ability to cope. When members see their peers’ success stories and peers acting as volunteers/group leaders this can boost their morale.

Level on Standards:

Level 1 – The Stroke Association can describe what they do and why it matters, logically, coherently and convincingly.

Methodology:

  • Quantitative surveys consisting of items from four externally validated tools were distributed to 30 SAVGs across England, either in person or via post. Questionnaires were distributed to stroke survivors at two time points, three months apart.
  • Invitations to complete a questionnaire were sent to 656 stroke survivors. Questionnaires were completed by 246 stroke survivors and 123 carers at the initial time point, with 115 of those stroke survivors and 57 of the carers completing a questionnaire at follow up three months later.
  • Semi-structured interviews were carried out with 11 stroke survivors and 5 carers (two of whom chose to be interviewed together).

Why this Level:

The methodology of this evaluation does qualify for Level 2 - pre-post surveys supported by interviews. But unfortunately the survey data does not show a positive change in outcome, and the qualitative data is based on too small a sample size to mitigate the lack of positive survey data. If the surveys had been able to capture the impact of joining a group, and this impact had been positive, the evaluation would have qualified for Level 2.

About the evidence journey

Progress: The methodology of this evaluation is robust enough to qualify for Level 2, and the Stroke Association is keen to build on what it has learnt from the experience of administering questionnaires built on validated tools and from the qualitative interview-based approach. It now plans to review a wider range of validated tools, to do more testing of outcomes tools with groups, and to establish more routine outcomes data capture, particularly for those joining groups as new members. The evaluation also provided some good qualitative evidence of positive impact, and helped to elucidate how stroke survivors experience the groups in practice and this too is evidence that the Stroke Association will use to build a more robust outcomes framework for the future that takes into account the outcomes described by group members and the way they were described.

Lessons learned: The Stroke Association has learnt much from the evaluation – in particular about the process of commissioning and managing external evaluators, and about outcomes measurement tools and approaches that might work in the future. Some of the key lessons learned are:

  • The Stroke Association underestimated the amount of work required of its staff and volunteers as part of supporting the external evaluation and will explore this with external evaluators more fully in the future.
  • The evaluators were given the opportunity to attend training in communicating with people who had had a stroke before they began their fieldwork. The Nuffield team took up this offer and really invested in understanding the Stroke Association’s client group and in engaging in an accessible way and the Stroke Association feels this paid dividends in generating insight-rich qualitative data and is something they would like other evaluators to do in the future.
  • The Stroke Association is now exploring whether validated tools and hybrid tools that draw on a range of scales and subscales from different validated outcomes measures, are the best way to capture outcomes data in their particular context. Their evaluators tried hard to create user-friendly data collection tools based on validated scales but this is not an easy task and much was learnt from this experience that is now helping the organisation going forward with its impact measurement plans.

Next steps: As the Stroke Association embarks on a major new programme to scale up its peer support groups and to test new ways of delivering support through groups, it is building on its learning from this first external evaluation. It is developing plans to: revisit the theory of change for peer support groups; develop a new outcomes framework; and review the range of validated outcomes measurement tools available and test these with group members. It intends to select/design a user-friendly but robust tool or suite of tools to support better self-evaluation going forward and once new data collection processes are embedded it will seek a follow-up external evaluation to help it attain a higher standard of evidence. A key challenge will be to find ways to capture and reflect the value of groups both for those joining new and early in their recovery journey after a stroke, and the value of groups for long-term members. The SAVG team is looking forward to working with external evaluators again to help them consider how they might do this as they believe there will be valuable learning here for others interested in assessing the value of peer support for people with long-term conditions.