Searching for information

People who experience severe mental health problems often search for information to better understand the symptoms they might be experiencing, to learn more about a diagnosis they have been given, or to research treatment options.

In recent years, the internet has become an increasingly important source of information and support with the development of numerous websites detailing information and the availability of different services, as well as online forums and interactive communities. However, more traditional forms of information such as pamphlets, brochures, flyers and books remain popular and are often given to people by health professionals.

Libraries are a good source of books or specialist academic literature. Learning from other people’s experiences through peer support groups can also be a valuable source of information. Alternatively, some people engage in mental health study or work as a way to source information and learn more.

This summary is about the experiences of people we spoke to who searched for information about their mental health, including diagnosis, treatment, medication, and support services. It is important to acknowledge that not everyone searched for information. Those who did so discussed the sources from which they had obtained information and the quality and relevance of the information they found. For more information about mental health, please see Resources and Information.

Quick Links

Searching for information
Sources of information
Quality and relevance of mental health information

Searching for information

Some people described how they actively searched for information, while others said they were less interested in finding information. Brendan said, ‘I was given some information, a pamphlet or something about, you know, this is bipolar, or whatever. I don’t think I ever really googled it or anything myself’. In contrast, Maria described ‘writing articles’ about information she had read about online and then sharing what she had written with others.

Tanai undertook a thorough search for information to help her understand her mental health condition.

Searching for information was most commonly undertaken after a diagnosis had been received. Anna described how she ‘relied’ on the information she searched for herself each time she received a new diagnosis from mental health professionals. Alice and Allen also searched for information directly after receiving their diagnoses, to supplement the information given to them by health professionals. For some people, it was important to continue searching for information throughout and well beyond their periods of being unwell, to keep themselves informed in light of the evolving nature of managing illness and recovery, and the provision of mental health care. A mental health diagnosis or diagnoses prompted several people to consider studying or working in the area of mental health, to learn more or to help others.

After her first hospitalisation, Lisa was motivated to change her university degree from law to psychology, which gave her a ‘greater understanding of the mental health professions as a whole’.

A few people talked about the benefits of the information they found. Some said it helped them ‘figure out’ more about their health condition such as symptoms, diagnoses, prognoses, and management options. This helped them to better understand what their diagnosis meant for them and what treatment and care options were available. Others said that searching for information themselves helped provide a broader perspective to the information given to them by health professionals.

Allen described the information he used to learn about his condition after he was first diagnosed.

Sources of information

People spoke about several different sources of information. The internet was commonly mentioned, but people also mentioned books, academic literature, talking with health, mental health and allied professionals, and finding information through studying or working in the mental health field.

Jenny’s insights into her mental health condition were obtained from a number of sources, including through reading and talking to her social worker and psychiatrist.

Several people felt they had gained more useful information from their own searches than that which was offered to them by mental health practitioners. A few mentioned that the internet did not exist when they were first diagnosed, and said this was unfortunate as it was a ‘great’ source of information. Carlo found that some doctors gave him information about his health and some did not, while Alice felt she didn’t find information from either her mental health practitioner or through her own initial searches particularly helpful.

In response to not receiving enough information from a mental health practitioner about her diagnosis, Anna turned to the internet.

Quality and relevance of mental health information

The amount and nature of information changed as people’s understanding of and management options for mental health conditions evolved. Many people discussed the quality and relevance of the information they found or were given. Searching for information helped a few people keep abreast of the changes in diagnosis and management options for their mental health problems. Allen and Alice each discovered that the initial information they had found became redundant when the definition of their diagnoses changed over time.

The information offered to people reflected legal changes in the way people diagnosed with mental illness are treated. Anna and Alice both mentioned that the amount of information on mental health available in the public domain has increased significantly over the years, although Alice felt that mental health websites could be improved in terms of language and content to make them better tailored to people who had a received a psychiatric diagnosis, or who were experiencing distress.

Alice found that over the years, information about mental health has ‘evolved’. She thought more ‘friendly language’ should be used in mental health information.