CarersBlog

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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 Carers.org and Youngcarers.net (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 Carers.org 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.

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November 21, 2011 - Posted by | Internet | ,

1 Comment »

  1. This is off topic but I was searching around to see if you’d written about the recent article [BBC Best of Today] about a nurse / carer who left a post-it note on the table of an Alzheimer’s patient telling her ‘not to bang the table.’ The patient suffered from severe Alzheimer’s and was on about a two minute cycle.

    I was hoping for some kind of debate / forum discussion.

    The piece was very critical of the person who wrote the note [like passive aggressive] but it made me think.

    I’m guilty of doing that exact same thing. I have a wipe board for my elderly MIL so she can keep track of all family members [and pets]. We find this works very well. It’s reassuring for her and it’s great for me as it reduces the constant questions.

    That aside. I was interested to hear of your change of circumstances. New year and fresh start. I hope all works out well for you.

    Comment by Maddy | December 21, 2011 | Reply


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