The Internet

The internet can inform and empower people with mental health problems, as well as their relatives, carers, service providers and policy makers. The internet offers a limitless resource for information and communication about mental health and between people with shared experiences of mental ill health. A huge range of internet services have been developed for people with mental health problems and people with mental health problems are also using the internet in new and powerful ways to develop online communities and campaign.

Background

The first mental health websites were launched in North America in the mid-1990s. These included Mental Help Net, set up in 1995, and Internet Mental Health, set up in 1994. Sites that focused on specific conditions, such as Schizophrenia.com, began to appear shortly afterwards. The latter included an internet based discussion forum providing a space for people diagnosed with schizophrenia to share information, advice and support.

Europeans and Australasians followed the North American lead a few years later, as more and more people began to recognise the potential of the Internet.

In the last few years the Internet has grown rapidly to become an important means of disseminating information, especially in the developed world.

There has been a huge increase in the number of email users and email services. This has made it much easier for anyone with an interest in mental health issues to contact other people. There has also been a rapid growth in the number of online forums dedicated to mental health issues or that include discussions about mental health.

There has been an equally rapid growth in the number of mental health websites within the voluntary, statutory and commercial sectors, as well as small organisations and individuals setting up their own home pages and web sites.

There has also been a growth in generic health sites and forums providing information about medical conditions, including mental health problems.

Agencies have clearly understood the internet offers an opportunity to reach far larger numbers of people than would have been possible before.

There is now a huge diversity of websites and forums, with many focusing on specific issues or aimed at specific groups. For example, there are now websites and forums on all of the most common mental health problems such as stress, anxiety and depression.

There are also websites on less common problems, and websites and forums for specific groups, such as people who hear voices or who self-harm. In addition there are websites and forums for people who describe themselves as survivors of mental distress and/or the mental health system. Others forums and sites concentrate on the needs of relatives and carers. These sometimes focus on fundraising for research into causes and treatments and providing support through self help groups.

How the internet is used

People with mental health problems are using the Internet in a wide variety of ways.

People with mental health problems – and their family and friends – will often look for information about problems, their symptoms and forms of treatment. They may also want to know about their rights, and the services and agencies which can help them.

This has opened up a whole new range of possibilities – people can now do their own research into the benefits and side effects of medications, for example, instead of having to rely on medical experts.

People with mental health problems are increasingly using the internet to publish information for their own purposes. These include:

  • personal accounts of living with mental distress – narratives, diaries, poetry or artwork
  • ideas and strategies for living with mental health problems, including the use of alternative or complementary therapies
  • user perspectives on mental health policies and practices, including guides to patients rights
  • assessments and criticisms of theories and policies about mental ill health, services and treatments
  • campaigns and calls to action.

For some people, publishing information on the internet is a form of therapy, allowing them to put their thoughts and feelings online and enabling them to gain some form of validation from the knowledge that others will read what they have written. For others, it is a way of helping other people in the same situation, sharing knowledge and experience.

For some people, publishing information online is a political act, enabling them to refute or counter information published elsewhere. This allows them to challenge inaccurate stereotyping and show that people with mental health problems are ‘people’ first. Sharing information online can also be used to mobilise other people into taking action for specific causes and campaigns.

People with mental health problems no longer have to rely solely on information provided by health care professionals. This process of information democratisation has been an increasingly important feature in the relationship between service users and professionals over the last 40 years. The internet is speeding up this process.

Problems with the internet

The internet can be considered a great equaliser – a tool for the empowerment of people with mental health problems and a means to challenge the stigma of mental illness in the wider community.

However there are some problems facing people with mental health problems who want to use the internet.

  • Some people don’t have access to the internet or have very limited access. For example, the disproportionate number of people with mental health problems in hospitals, prisons, on the streets, in low income households or with additional disabilities.
  • The internet – and computers in general – can seem very daunting, especially to people who are easily intimidated or confused. People may struggle to understand the technology and the concepts and the jargon.
  • Some people with mental health problems, especially those who feel they have been abused by the system, are reluctant to visit sites or use forums where their identity is recorded. This includes sites that require members to log in with personal information.
  • The sheer volume of information about mental health issues on the Internet can be a problem in itself. How do you even begin to decide which sites to look at? And how do you judge which are likely to be the most relevant and useful to you?
  • The design of some websites and forums is very poor, making it difficult to find what you want. Many sites pay little heed to accessibility, with poor layout and legibility. This is possibly because the site builders are unaware of accessibility standards.
  • The format in which the information is presented on the website or forum may appeal to some people but not to others. For example, some people prefer to look at pictures, listen to audio clips or even read narratives, rather than wade through lengthy, academic text.
  • The quality of the information provided on some websites and forums is very poor. For example, the information may be out of date, inaccurate or unreliable. Or the text may be full of jargon or written in incomprehensible language.
  • The information provided on one website or forum may flatly contradict the information provided on another. Which you choose to believe depends as much on your own beliefs and values as it does on the scientific credibility of the information.
  • We also have to acknowledge that some people are simply not interested in using the internet.

Mental health problems caused by the internet

We need to be aware that the Internet may pose its own risks and threats to mental health. Problems include:

  • computer rage, when users become frustrated with their computers or the internet as a whole
  • internet addiction – according to some commentators, people can become dependent on the internet to the detriment of the rest of their lives.
  • fragmentation of society – people lose communication skills because they have less need for face-to-face interaction with other people. However the evidence on this is mixed. Many people report that the internet actually brings people together and encourages more social interaction, albeit online.

Implications for website and forum managers

If you run a mental health forum or website, or you are planning to set one up, you may like to think about some of the following issues:

  • Why do you want to run a website or forum? If it’s not actually adding anything new or different, should you bother? There are plenty of forums and sites out there already and you may just be adding to the confusion. However, if you feel you have something worthwhile to say then go ahead.
  • Set clear standards for the content, the design and the performance of your online service. For example, ensure that your site or forum is kept accurate and up to date and that it is easy to read and accessible. Make it clear where you got your information from and if you are trying to promote a particular viewpoint. If you don’t bother with standards or you claim to be objective when you aren’t, people may get frustrated and simply go elsewhere.
  • Make use of developing technology where it is appropriate. For example, you may want to make your site more interactive, so as to provide a more useful and enjoyable experience for your users. But don’t use spy technology, such as cookies or registrations, unless it’s really necessary. Where you do use it, make it clear why you are using it. And make sure your site or forum is secure, so that users can be confident their details can only be seen by people who they want to see them.
  • Promote your forum or site. If you don’t do this effectively, your service will be drowned out by the millions of others out there. You may find it useful to
    •  set up reciprocal links to other mental health sites and forums 
    • submit details to the generic search engines like Google and to specialist mental health portals
  • Put details of your site or forum on your printed materials.
  • Involve people with mental health problems in the development of your forum or website – or encourage them to set up their own sites. Not only does this ensure that your site will be more representative – it will also give mental health service users new skills they can transfer to the employment market or the wider community.
  • If you run any kind of establishment, such as a drop in centre, a residential home or a hospital, provide internet terminals in the building. You may also need to provide training and support, especially for people who have never used computers before.
  • By providing access to the internet, you could enable service users to overcome the isolation that many of them face. You could enable them to investigate new interests and hobbies and to develop new friendships online. The internet could be part of a process of opening up their lives again.

Conclusion

There are thousands of websites and forums with information on mental health issues. And there are millions of people with mental health problems using the internet to look for information, to share their thoughts, feelings and experience and to bring about change. As a result, the internet is providing a bridge between people who are frequently excluded or marginalised and the rest of society. The internet could lead to a lessening of stigma faced by people experiencing mental health problems and more openness in society about the causes and consequences of mental distress.

That is not to say that there aren’t some significant problems, which prevent people with mental health problems from using the Internet. And we must not forget those people who are unlikely to have any meaningful access to the Internet for the foreseeable future or who are simply not interested.

We would also wish to stress that, although the internet provides a valuable additional source of information and advice, it should not be regarded as a replacement for face to face services.

If you run a website or a forum you can play a part in the development of the Internet. You can help to ensure that it is inclusive and that it helps to promote positive mental health. So let’s embrace it!



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