Peer support groups and young black and minority ethnic disabled and Deaf people

Tracey Bignall, Jabeer Butt and Deepa Pagarani

An exploration of these, informal support groups using young people’s own words.

For young disabled people of Asian, Caribbean and African origin, peer support groups provide a forum for emotional and practical support, enabling them to discuss issues around race, ethnicity and religion, and to share experiences with others from the same background.

This report, part of the Race and Ethnicity series, explores the development of these informal support groups, including:

  • The purpose of peer support groups;
  • How the groups have formed;
  • What they do;
  • What works with the groups and why;
  • What affects the growth and maintenance of such groups;
  • Examples of processes, such as decision-making and planning.
Summary

Summary

Peer support is important to all young people, but previous research has shown that young Asian, Caribbean and African disabled and Deaf people have limited knowledge of where to get this support. Yet some do go to local peer support groups to spend time with other young black and minority ethnic people who have similar experiences. Researchers from the REU spent time with young people in five peer support groups to learn more about their groups and what they valued from them. The researchers found:

  • Young people joined the groups to:

- meet other people and make friends;
- do something different from home and school;
- explore their identity;
- be somewhere they could be themselves, feel comfortable, and express themselves easily;
- discuss things that matter to them;
- get information and learn new things;
- get more confidence, self-esteem and independence;
- go out to clubs, the cinema or on trips;
- have fun and not be serious.

  • Many of the young people described feeling bored and lonely, and not being able to spend time with people who really understood them. Being part of a group was a chance to change this.
  • In all five groups, young people were involved in some way in deciding what their group was about and what they wanted to do or discuss.
  • All the groups originated from initiatives led by disabled people's or Deaf people's organisations. In two cases, the idea came from young people who belonged to a larger group, but who wanted to set up their own group.
  • Getting support from parents was essential. The role of the support worker in providing parents with good quality, accessible information was key. Young people said that for some parents, the gender and/or ethnic composition of the group and the time of the meetings were also important factors.

Background

In 1998 the researchers spoke to young Asian, Caribbean and African disabled and Deaf people about their lives, experiences and plans for the future. Loneliness and a lack of peer support were issues they raised. Several reported having few or no friends because of a lack of opportunity to meet, develop and sustain friendships. They wanted to meet other young women and men who were similar to them. But they knew of few peer support groups and had little information on how they might find out about such groups.

However, some studies have found that some young Asian, Caribbean and African disabled and Deaf people have established local peer support groups so that they can spend time with other young minority ethnic people and to meet their need for emotional, social and peer support. This study aimed to find out how these groups developed and what the young people valued about them.

What is a peer support group?

A peer support group is a group that provides emotional and social support to people of the same or similar age. Studies about peer support groups for young disabled people have shown how membership of these groups helps them in their personal development and provides an opportunity to share experiences and make friends. Some research evidence also indicates that peer support groups for black and minority ethnic disabled and Deaf people allow them to discuss not only concerns specific to their impairment but also their ethnic identity.

Why young people go to a peer support group

The support groups met on a weekly or fortnightly basis. Each group had a specific focus, such as going out for social and leisure activities, discussion and learning or self-advocacy.

The young people went to the groups for many reasons. Sometimes this was to meet up with friends: "It's alright. Friends here." Sometimes the friendships that developed in the groups continued outside of group sessions.

At other times they went to get information and develop new skills:

"If [the group supporter] didn't tell us the information about things ... we wouldn't have any information, we wouldn't develop."

or just to have fun:

"it's [group sessions], it's like joking really, fine to have a laugh and make new friends."

Importantly, the groups were a forum for providing emotional and social support. Being able to meet and talk (either verbally or through signing) to others was important, particularly for those young people who lived on their own or had limited communication with their families. One young woman said of her group: "We talk about everything that matters to us."

Having 'something to do' was raised as a particular need. A number stressed how they looked forward to attending the group sessions.

"You can't stay at home, 48 hours in the house. [If] you don't come to the meetings or go out, you don't know what's going on. [It's] something different to do."

"'Cause I'm living on my own ... sick and bored of watching TV as well."

The young people mentioned some of the benefits of belonging to a peer support group. These included increasing their personal esteem, learning new skills and increasing confidence. Often young people were helped merely by pursuing the aims of the group. For example, the African Caribbean Leisure group enabled the young people to develop independence through a number of leisure and social activities.

Being involved and making decisions

The young people were actively involved in the groups. For some this involvement was demonstrated in the way the groups developed. In two of the peer support groups, the idea came from the young people who belonged to a larger group, but who wanted to set up their own group. The Bradford Deaf Asian women separated from a larger mixed group as there were some things they wanted to discuss as women. The Black People First group similarly developed when black and minority ethnic people attending the mainstream People First organisation wanted to have their own group for people with learning difficulties.

The young people's involvement and participation was highlighted by how the groups were organised. Some young people were involved in organising events, such as an Eid party. Others explained how they decided what would happen at group sessions. The African Caribbean Leisure group, for example, held weekly planning sessions. This involved the young people making decisions through a voting process which ensured everyone got a chance to do what they wanted. In addition most groups involved everyone in making group rules about behaviour, such as not swearing.

The importance of having a peer support group

For the majority of these young people their group provided one of the few opportunities they had to explore their ethnicity. They could find answers about their religion or discuss issues such as discrimination. Some people mentioned the racism they experienced at mainstream disability centres or disability groups and how they felt better attending a group for young black and minority ethnic disabled or Deaf people. One young woman said: "I feel better mixing with my own."

Group activities also assisted in looking at ethnicity. The celebration day activities by the Black People First group was one example, which involved group members finding out about each others' ethnic background, through tasting food from African, Asian and Caribbean countries and trying on traditional dress. One young man commented about the session: "I enjoyed telling people where I'm from and listening to people talk about where they come from."

For young Deaf people especially, attending their group gave them an opportunity to discuss religious and ethnicity issues. One young woman explained what happened at her group: "It's talking about religion, being Asian, being a Deaf woman."

Exploring ethnicity with families could be difficult where parents used spoken Asian languages and the young people used British Sign Language or English. Difficulties in communication were a barrier to getting information about their identity as another young woman explained:

"My mother and father, they don't know sign language, they can't teach me about my own religion and my own culture."

Deaf young people recognised they belonged to a Deaf culture, but they also wanted information about their Asian cultural identity.

Some things that affected how the groups worked

A number of things affected how the groups could organise themselves, how involved the young people were and how the groups were sustained.

Support workers
All the groups had a support or development worker. One group also had access to sessional workers and volunteers. Importantly, this was the only group that was able to give the young people a chance to go out socialising together each week. The way supporters worked with the groups had a significant influence on the group's development and purpose. This varied from group to group. Some supporters took on a passive role, encouraging the young people to be more involved in organising their group, while others led the young people more directly (this was more apparent in the groups for those with learning difficulties). However, how much the young people were involved in organising their group activities was sometimes affected by how active a role the supporter undertook.

Parental support
Getting support from parents was essential for young people to attend these groups. Some parents got information about the groups and encouraged their son or daughter to attend. Often young people explained that parents were sometimes reluctant for them to attend the group because they did not know what the group was for.

Providing parents with good, accessible information was essential. Young Asian women in particular pointed out parents' concerns about the timing of sessions (whether they were held during the day or evening) and the gender of those attending the group. One young woman explained:

"The problem is getting permission from your parents. So I'd rather have my social time and be able to chill and relax where it is a girls-only environment."

Once again supporters were key. They played a particular role in ensuring parents had accurate information. Often this involved sustained personal contact with the family as well as providing information in the family's home language.

Venue, transport and money matters
Having somewhere permanent to meet was important to the young people. Only one group had their own venue. The others had either permanent or temporary use of a room in a disability organisation. The young people suggested where they met was part of their identity. It could affect individuals' sense of belonging to a group and influence their morale and participation. The Coventry Deaf Asian Women's Group had had several moves and this affected some young women. Despite venue difficulties for some, all the groups still managed to meet regularly.

Money was an issue for some young people and affected their ability to participate in the group's activities. Notably this related more to the African Caribbean Leisure Group than the others, as the group's independence ethos meant it was necessary to have money to contribute to the activities. One person commented: "I like bowling. We used to go but it's a bit too expensive now."

Most groups received funding from a number of sources including the local authority. Inevitably, funding affected what the groups could do and how long some groups could continue to run. One group had received a grant from Comic Relief but was having to look for further funding so that it could continue meeting.

The young people spoke of how transport sometimes affected their attendance at their peer support group. Views were mixed about the need for organised transportation. The Bradford Deaf Asian Women's Group, for example, had a mini bus to collect them, which relieved parents' concerns about safety. Moreover, organised transport might encourage more young people to join a peer support group. But other young people did not want organised transport as they felt this would affect their independence. One young woman explained:

"If we're gonna go out and live then we need to learn how to use the bus and all that."

Conclusion

The opportunity to meet and be with young people similar to themselves is important for most young people. Attending a peer support group was important in the lives of these young black and minority ethnic disabled and Deaf young people. The groups enabled them to gain emotional support, make friends, learn new skills, further their personal development and undertake a number of activities as well as to have fun. A number of factors, such as transport, venue and money had an impact on these groups, but it was clear that the young people enjoyed attending their peer support group and being involved in organising support so that it met their needs.

About the project

This study is based on research with five peer support groups attended by Asian, Caribbean and African Deaf and disabled young people in Bradford, London, Swindon, Coventry and Leeds. Two of the groups were for Asian Deaf women, two were for African and African Caribbean young people with learning difficulties and the other was a group for black and minority ethnic young people with multi-impairments. The young women and men were aged between 16 and 30 years. Focus group sessions were undertaken with the groups.

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