The complicated issue of friendship

Note: The following blog post has been contributed by Ewan Main, Online Support Manager at The Princess Royal Trust for Carers

Gigi Burgdorf wrote recently about some of the unexpected reasons carers gave for using internet-based services. One particularly poignant response was “no-one can hear what you’re typing.” This kind of privacy can be vital for people using an online support service; perhaps especially so when, as is the case for some of the young carers we meet, their families wouldn’t want them identifying themselves as carers at all.

Similarly, one of the things that our users have told us they value on our sites is the chance to start afresh, opening themselves up to others on their own terms, and without fear of being judged on their appearance, accent, status or—yes, sadly—the fact that they’re a carer. The teenage experience in particular is rife with issues of labelling, categorisation, conformity, in-groups and out-groups. The same is true, no doubt, of all age groups—sometimes in subtler ways, and sometimes not so subtle. It’s no surprise, then, that people might turn to a medium in which they have some say over the ways in which they’re labelled. Internet services can do this: used carefully, they enable you to connect with other people, while potentially giving you the tools to limit and define those connections in quite specific ways.

That’s why it’s been an interesting experience for us to tread, half a step at a time, into the world of social networks. (Since it’s 2011, clearly we’re mainly talking Facebook; but ideally our experiences in this should help pave the way when the Next Big Thing comes along). Engaging with people on Facebook specifically connects you to their real names, identities, friends and information. We’ve been working recently on developing and testing Who Cares?, the Trust’s new Facebook app that raises awareness about a carer’s life and its effects on their friendships. The app helps you to pick one of your Facebook friends to be your “carer”; the ways in which this affects their life then start to become obvious. It’s a thought-provoking experience, and it combines fact with fiction, online with offline, in a way we’ve never done before.

At the same time, we’ve been gradually integrating other social media stuff across both and (YCNet). All of these provide small backdoors to the internet: ways to leave our site and make contact with others on other platforms. That’s something we resisted for a long time on YCNet; since we can’t guarantee a user’s identity, we couldn’t advocate their getting in touch with each other privately. Equally, if some dispute began on and continued on some other site, we were limited in what we could do to help sort things out.

But here’s the thing: in the end, one of the biggest favours we can do for carers is to encourage and support their forming connections with other people. It’s often said that people are busier and have less time for each other these days. But the evidence is clear that being a carer can, and frequently does, have a significant effect on your chances of making and keeping friends.

So, over the last year we’ve started to approach things slightly differently. On the security/privacy side of things, we’re moving slightly further away from prevention, in favour of education: rather than putting all our efforts into restricting young people’s contact with each other, we want to support them to do it safely. Nobody has to opt into every feature on our website, but we have to allow friendships and interaction to flourish—or, at the very least, get out of the way. There are enough barriers already.

Who Cares? is an awareness-raising rather than a support tool. On the surface it’s a piece of fun, but it definitely makes you think. Without giving away too much of what’s in it, I think some people will be uneasy about the message it conveys. I think it’s broadly realistic. But it’s partly optimistic too. And if it encourages somebody to think twice about a friend or neighbour’s situation, and perhaps spare a friendly word, so much the better.


November 21, 2011 Posted by | Internet | , | 1 Comment

No one-size-fits-all method for providing carers’ services online

This is a guest blog by Gigi Burgdorf, Practice Sharing Champion at The Trust and Crossroads Care.

When I first started conducting focus groups for a report about carers and the internet – How can the web support carers? published this week by Crossroads Care and The Trust – I thought I had a pretty good idea of what the research would reveal. I had a list of questions about what sites and features carers liked and what barriers might prevent them from getting online, and to be perfectly honest, I thought I could predict what many of the answers were likely to be.

New report on ‘How can the web support carers?’

But when I actually started getting feedback from carers, I was surprised at the sheer number of different viewpoints on every issue. It soon became clear that writing the report would not be a simple matter of saying, “these are the services that should be available online and here’s how to set them up.” When discussing the idea of accessing emotional support by email, it was easy to predict that opinion would be divided due to the fact that some people love email while others hate it. But the actual reasons for or against went beyond a simple case of like or dislike.

At one focus group, a supporter of the idea said that, although she didn’t love email, it would be a good way for her to access support because “no one can hear what you’re typing”. She felt she couldn’t be completely open on the phone or when a support worker came to visit because the person she was caring for could hear her from the next room, meaning she had to censor what she said to protect his feelings. A clear case for email support was made, and several other carers echoed the sentiment.

And then another carer spoke of how useful she found telephone support as it meant she could talk while doing other things like folding the laundry or cooking her children’s tea. If she wasn’t able to carry on with other responsibilities while having the conversation, then she felt she wouldn’t be able to find time to talk at all. To her, and several other carers with similar perspectives, offering email support was as good as offering no support at all.

For every type of online service we discussed, there were endless reasons for and against. It began to seem as though there were as many different opinions about carers’ websites as there were carers. And ultimately, that’s what the research showed – that because every caring situation is different, there is no one-size-fits-all method for providing carers’ services online.

So instead of trying to formulate prescriptive rules about carers’ websites, ‘How can the web support carers?’ focuses on sharing the views of carers themselves as a way of illustrating the issues providers need to be aware of when developing carers’ services online.

Ultimately, I hope the report gives readers the experience I had in the focus groups when I realised the necessity of offering choice to reach more carers, and the importance of consultation – even when you think you already know the answers.

November 9, 2011 Posted by | Internet | , , | 2 Comments

Carers and the internet

Note: The following blog post has been contributed by Michele Lambert, Web Manager at The Princess Royal Trust for Carers

Working day in and out on the internet, I can veer from an incessant curiousity and excitement about new technology and its applications to an occassional urge to throw my computer out of the window and make a break for freedom, to a place where the world wide web can’t reach me. It can sometimes feel like communication overload; there are so many options to contact each other wherever we are, from Twitter to Facebook to now old-fashioned email.

Reading an old letter over the weekend, it seemed unbelievably quaint that I used to keep in contact with friends and family in that way. Now you can be at the other side of the world and still in a second help your friend decide what to cook for lunch. It’s so immediate that it has totally changed the way we interact.

With the internet a new world really did open up and brought its own particular challenges. Privacy intrusion and safety issues frequently come up in relation to Google and social networking sites. Last month there were even reports of ‘Facebook depression’ among young people; the site could feel like a popularity contest, heightening feelings of loneliness.

For most though, the internet reinforces social connections – and for those who are particularly isolated, connecting with others via social media can make a huge positive difference to their lives.

Listening to music onlineA survey we ran on our website earlier this year showed that nearly 9 in 10 carers (87%) find it difficult to leave their home due to their caring role. Over half (53%) felt alone and isolated and 46% had no free time to visit support services.

So this month we asked carers blogging on our site to write about the internet and its impact on their lives – and it makes for interesting reading.

From a young carer who struggles to imagine a world without it to the unexpected uses technology is put to. One carer writes: “When.. my daughter is lonely as she is at times, she goes upstairs and we chat on messenger. It is a great laugh and I pretend I am different person each time. This helps her type, learn to communicate and have a joke.”

Another uses Google maps to “walk” around the streets where she grew up. Often the opportunities it offered were not to do with caring, but helped in coping with some of the limitations that a caring role brings.

It’s clear digital innovations have a huge potential to empower groups such as carers, particularly those at the sharper end of caring who have difficulty accessing physical services. However 20% of the UK is not online – hence the government’s current digital inclusion drive. It’s about improving access to technology for groups who may be disadvantaged or marginalised due to age, disability, or geography. This might be due to lack of physical access or lack of resources or the skills to benefit from it.

Of course new online services need to be designed with those (living and working) on the front line and cannot be a replacement for face to face services – there will always be more complex cirumstance than online can cope with and there will always be a need to ultimately have someone there to talk to.

Contrary to my breaking free impulse through, it’s obvious that the internet really does represent freedom for a vast number of people who otherwise wouldn’t have this – whether that is empowering them to organise protests and demonstrations, or the opportunity to access info, friendship and support they would otherwise go without.

April 27, 2011 Posted by | Internet, online | , , , , , , , | 6 Comments