Peer support groups are crucial for sharing experience and tackling isolation
The role of people who have grown up with a brother or sister who has a lifelong learning disability or autism is rarely acknowledged.
Adult siblings often advocate and care for their brothers and sisters while also juggling support for their elderly parents, their own children, and their work. Many have always come second to another person and, with no contact with others who share their experience, are vulnerable to isolation, anxiety and depression.
A year ago Sibs, the only charity in the UK representing the needs of siblings of disabled children and adults, began developing volunteer-led peer support groups across the country for adult siblings of people with a lifelong learning disability or autism. Creating the network was a response to requests from adult siblings who wanted to meet with peers in a safe, supportive setting. Developing such a network also supports Sibs’ key aim to tackle the well being and isolation of siblings.
With cuts to welfare and support services, this kind of support is vital; siblings might be concerned about the impact of cuts to provision on their own life or on that of their brother or sister. Many struggle to cope with emotional issues such as guilt, bereavement and worry about the future.
Since January, Sibs has supported four pilot groups – in London, Brighton, Nottingham and Birmingham. Each group is run by people who are siblings themselves and have been trained by Sibs to facilitate the support meetings. At the end of September, the network had reached almost 50 people through these initial groups. Our next training day in November will enable us to support more people to establish groups around the UK.
Sibs has developed some important practice when it comes to rolling out this UK-wide voluntary network.
Our first step was to define the network’s purpose and its relationship to Sibs centrally. Sibs is the “parent” UK-wide charity, with individual groups following our principles outlined in a charter. The groups’ aim is to improve siblings’ well being and resilience. The goal is also to empower people to be advocates for their brothers and sisters, support them in moving to more involved roles as their parents age, and to give siblings a voice within care services.
To find facilitators to run the new groups, we approached people who had contacted Sibs and expressed an interest in peer support. We discussed what the voluntary role might involve. In-depth telephone consultations enabled both Sibs and potential organisers to decide if they were right for the role.
Next, we held a training day, offering step-by-step details on establishing and running a group. It also covered likely topics for discussion and how to handle challenging situations.
We are providing ongoing telephone and email support to the facilitators, who have signed up to run a group for a year. A private area of our website for group facilitators enables them to download resources, share topic ideas or discuss activities.
We maintain regular contact as the group facilitators’ feedback is vital. The groups operate at arms-length, but we evaluate and assess their impact via feedback forms.
One challenge is managing group members’ expectations; the facilitators are their peers and run the sessions on a voluntary basis, they are not professional experts. Sibs values the energy and time facilitators bring to the project.
In addition, working with volunteers who may have full-time jobs and a family or caring responsibility means progress may be gradual. While facilitators were trained in January, the first meetings have only recently taken place. To make the network sustainable, we must keep up the flow of facilitators being trained and supported.
Our goal over the next year is to support a total of 10 groups and extend beyond central and southern England to the West Country, north-east and north-west. Sibs’ vision is for every sibling in the UK who has grown up with – or is growing up with – a disabled brother or sister to have access to information and support about sibling issues. Although the project is time-consuming, it is crucial.
As a member of one group told us recently in feedback: “This is a place where other people understand us and where other people understand our disabled brothers and sisters.”
- Monica McCaffrey is chief executive of Sibs