There comes a point in everyone’s life when they get news that changes their life…of course it’s not always bad. Think “you’ve got the all clear” or “you’re going to have a baby”.
But what if that’s not so good. “You have diabetes” or “you have developed COPD”. In those cases firstly you might ask the doctor or nurse- “what can you do?” and “how is it going to affect me?”
So after a chat with your doctor or nurse, you may wander out of the room thinking “What’s COPD/Diabetes…?”
The NHS is very good at telling you what’s wrong or right with you, and offering a treatment. But how well is it able to tell you how to live with it?
People may have questions such as: “how can I go out drinking with my friends?”, “which tube stations are wheelchair accessible?”, “should I tell a prospective employer about my condition?” Such questions may be better answered by people who have experienced these specific problems themselves.
At this point many people turn to the internet for answers. This can be through formal internet sites such as those run by the NHS or charities or through less formal ones such as Health Unlocked, to connect with those who have similar problems.
At NIHR CLAHRC Wessex we are looking at how people’s social networks and their communities support them to manage a long-term condition (That’s an NHS term for something like diabetes or kidney disease – so called LTCs.)
New technologies give us the opportunity to connect with others with similar interests, needs or concerns. Before the internet, it would have taken a long time to find someone who has experience of managing diabetes, whilst training for a marathon. But in these networked times it’s very easy to find someone who has encountered that very same, specific problem.
That ‘learning how to live with’ approach to a condition is often called self-management.
Until recently, research hasn’t specifically explored how social contacts online may support self-management.
There is a need to look at how online support may compliment traditional offline support from healthcare professionals, friends and family. More specifically, when such support becomes useful.
This is where our research comes in. We’re speaking to people in Hampshire, the Isle of Wight, Dorset and Wiltshire, who use online communities for help and advice in managing their condition.
We ask people how they ended up using these communities? How people online have supported them in managing their condition? And – Where this support fits in with the rest of the support that they get from people offline such as their doctor, friends and family?
Essentially we are interested in finding out more about the types of support that online contacts provide and how this is different to other forms of support.
We look forward to letting you know how we got on .