NIHR CLAHRC Wessex – How Social Network Community Support Aids Management of Long-Term Conditions – Can You Help?

Our friends at the National Institute for Health Research CLAHRC Wessex are calling for people with Heart Failure and other long term conditions to help inform them of the help they receive from social network and online support groups to manage their conditions…

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 having a baby”.

But what if it’s not so good. “You have heart failure” or “you have diabetes”. In those cases firstly you might ask the doctor or nurse- “what does that mean?” or “what do I need to do?”. But answers to these questions may not sufficiently equip someone with the knowledge needed to manage the practicalities of managing a condition in daily life.

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 often comment that the amount of time they spend with their doctor or nurse isn’t enough to find out everything that you need to know about living with a chronic condition such as heart failure.

People may have questions such as: “how can I manage daily life feeling this breathless or tired?”, “should I tell a prospective employer about my condition?”, “how can I tell my friends and family about my condition so that they can understand what it is like?”, or “How can I manage my daily medications?”. Such questions may be better answered by people who have experienced these specific problems themselves.

Furthermore, the invisible nature of a condition such as heart failure may lead people to feel isolated and alone and many feel that their friends and family do not fully understand what it’s like to live with that condition.

At this point, many people turn to the internet for answers or to connect with people who understand what it is like to live with the condition. This can be through formal internet sites such as those run by the NHS and other organisations; or through condition specific online support groups and community sites such as ‘Pumping Marvellous’ Help for Hearts Group’, or ‘Heart Failure Aware’, hosted on social media sites such as Facebook; to connect with those who have similar problems or concerns. Once there, many people find that these forums provide a ‘safe space’, where they can discuss aspects of managing their condition in daily life that are more difficult to openly discuss offline; with people who understand what it is like to live with that condition.

At NIHR CLAHRC Wessex we are looking at how people’s social networks and their communities support them to manage a long-term condition such as heart failure.

New technologies give us the opportunity to connect with others with similar interests, needs or concerns which gives us new opportunities to connect with people with very specific experiences of managing a long-term condition in daily life. Before the internet, it would have taken a long time to find someone with experience of dealing with very specific problems relating to the management of your condition, especially if you did not already know someone with the same condition. The ‘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 are particularly interested in speaking to men, who so far, we have found more difficult to reach.

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 (or the same) to the other forms of support that are important to them.

It would be great to hear from you about your experience of managing your condition and how online communities can help. The great thing about this kind of research is that the people we talk to are the experts and we are trying to find out about what they do and who/what helps them manage.

If you would like to find out more about this research, or to request a participant pack which contains more information about what is involved in this research, please email Chris Allen at ca2v07@soton.ac.uk.

We look forward to hearing from you and will keep you posted as to how we get on.

** Download a patient study recruitment infographic for sharing by clicking here **