Listening for what young carers need

Previous posts we’ve written have outlined the work we have been doing to support young carers in lockdown, through calls and online activities. These activities were not designed in isolation by staff, but were rather a response to the needs of young carers we were hearing.

We are on a journey of embedding user design within the development of services we offer. We’re not there yet, but we’re starting to get the building blocks in place. A key part of this is listening to carers, and challenge some of the assumptions we might have around how they feel and what they need. Catalyst have written a great piece on how to listen to users remotely.

So, how have we been getting young carers involved whilst in lockdown? Initially, our views were informed through our check in calls with families. Although the calls were primarily to ensure young carers were doing ok, where feasible they also offered a chance for very light touch user interviews. I think we could have been more thoughtful in the questions we asked (we hadn’t really considered these calls to be user feedback until we were part way through!) but they have still given a lot to challenge us about what we offer in lockdown and beyond.

In addition, before lockdown a group of young carers called Speak Out Young Carers or SOYC, met regularly. Open to young carers of any age, the group enables young carers to have their voice heard on a range of issues, from the design of our young carers room through to their thoughts on Council strategy. It seemed obvious to find a way to get them involved in the design of our lockdown offer from the start. As we were in the process of piloting zoom for adult activities, it seemed sensible to trial it for SOYC too.

The first session provided fantastic insight in to what young carers themselves would like us to do to support other young carers. Strong minded and open as ever, the group were unanimous on 2 fronts:

• We should be talking to young carers as well as parents to get an idea of how they are really feeling, rather than relying on someone else for that answer. True user involvement! Speaking to someone different might be just what they need and gives them a chance to be honest with someone who isn’t going to get upset with what is said.
• Linking young carers together to talk is really important. It’s also good to have an individual, regular check in from staff, some said through video, others through phone calls. Back to relationships, and the need to be connected with people who can understand and who you trust to support you

What was also interesting was the discussion around technology. Although young carers were using tools such as Whatsapp, Facebook and Instagram to stay in touch, this was more predominantly older young carers. One primary aged child said they wouldn’t even know how to contact friends using technology. It can be easy to assume that it’s the elderly who are isolated through a digital divide, but this is only half the picture. We need to consider what this means for us both now, and moving forward. Now we know young carers are keen to be connected, we’ll be using some of the techniques identified here to consider what this might look like, building on this group ‘user interview’.

So, SOYC online has been vital in enabling us hear the views of the Young Carers as well as providing a safe “space” for young carers to connect, catch up and reflect together. Some of our members said they had, up until our first digital session, had little to no contact with their peers since lockdown, especially others who care. We were even able to re-engage 2 members of the group who had drifted away.

However, running a participation group for under 18's online had it’s drawbacks! We’ve found that young carers engage better when they are having fun, are excited by what they see and are focussed on the task in hand. Each of these elements is more difficult to deliver online.

• We delivered some mindfulness exercises, such as those we deliver in face to face sessions, and although screen sharing allowed them to run, it didn’t have the same effect. In the Centre we are mindful to create a relaxing space, thinking about sounds, space, lighting, colours and textures. All of these factors were out of our control online, with young carers sat at kitchen tables or on bedroom floors, possibly within ear shot of other members of their family who wouldn’t usually be around during our groups. Needless to say, the young carers took everything in their stride. They provided honest feedback to us, with the unanimous feeling that although it was “ok” it didn’t work online.
• Linked to this, it felt like the energy generated in face to face sessions was lost. It was harder to build the sense of team, and focus on the issue. Those involved were brilliant at inputting, but they are a committed, focussed group already. How possible would this be with those we know less well?
• Although none of our participants have expressed this; there is potential for young carers not to be as open as they usually would during our groups due to being at home and within ear shot of family members.
• Finally, we need to work out guidelines and processes to enable us to use digital tools (Zoom or others) most successfully to gain input from young carers. As this was the first session, we didn’t use the breakout room function as we realised we hadn’t considered the implication of a staff member being ‘alone’ in a room with young carers. There’s not necessarily anything wrong with this, but it’s not what usually happens so we need to consider what the consequences might be and plan future activities accordingly.

We definitely see how virtual user groups can enable us to hear view of young carers quickly and effectively, as well as enabling us to reach out to hear new voices. We want to embed the positive elements of the group within our work as well as work on the challenges we’ve faced to make this a vibrant part of our user design process. But it’s definitely a work in progress, as is the rest of our user design journey!