1.1 Information searching

Time spent searching is not wasted. This is how you develop your critical skills and identify sites you can trust.

The process of looking for information is important. It helps many people adjust to their condition.

There are stages to a condition. Different types of information may be needed at these different stages.

• Before a diagnosis:
  (a) to work out what the problem is.
  
  
• Just after a diagnosis:
  (a) to find out why it has happened;
  (b) to find anything that might help.
  
  
• Later on in the condition:
  (a) to focus on the things that work for you;
  (b) to find more detailed information;
  (c) to read the medical research literature.

At all these stages, making contact with a support group for your condition can be very helpful. So search the Internet for the sites of national or local support groups.

Support groups can offer the following help.

• Provide emotional and personal support:
  (a) from people who have had personal experience of the condition and so understand;
  (b) by putting you in contact with other people with the same condition and their carers.
  
  
• Provide information:
  (a) of good quality;
  (b) easy to understand;
  (c) made readily available, e.g. through leaflets, Web sites, newsletters;
  (d) covering specialised, medical topics, e.g. rare conditions;
  (e) explaining the medical research literature.
  
  
• Advise about information:
  (a) how and where to get information;
  (b) what is good quality information.
  
  
• Act as a link between the patient or carer and the professional.
  
  

• Fight the patient or carer's corner.
  

Professionals can also provide information:

• the contact details of a support group;



• an information leaflet.
  

People you can ask include:

• staff at your public library;



• your local Patient Advice and Liaison Service (PALS) in hospitals;



• health care staff.

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© Copyright for this site is held by Contact a Family and the Information Society Research and Consultancy Group, School of Computing, Engineering and Information Sciences, Northumbria University. Site published February 2003. Last updated October 2006. Review date October 2007.