In a survey we carried out in 2016 (with 1937 respondents), less than 41% of parents receive written information when they get a diagnosis for their child. In addition many families felt that the lack of reliable, accessible and impartial information hampered their ability to make informed choices for their family.
So as a parent or carer of a child with a brain condition you may be keen to look for more information about your child’s condition, therapies, treatments or other services on the internet. While the internet provides a huge amount of information, much of which is freely available and easy to access, not all websites give reliable information.
Our aim is to equip you with the knowledge, skills and confidence you need to do your own research, appraise the information you find and make your own decisions about what’s right for your family.
As a first step our guide on Finding and appraising information and evidence on the internet makes some suggestions to help you search efficiently on the internet, and to appraise whether the websites you find present reliable and unbiased information.
Parent Research Requests
If you need further help, we will be happy to help. One of our Research Officers can help you frame your question in a way that will provide the evidence you are looking for. We can give advice on search strategies and key websites to explore as well as signposting you to sources of reliable, impartial information. Please get in touch with [email protected] for more information on this service.
Your requests help others
Whatever information you are looking for, the chances are that it will also be useful to other families. We use a systematic process for dealing with your research requests that allows us to identify and prioritise the issues that are concerning you. Where reliable evidence based information already exists we produce brief fact sheets signposting to it. Where such information is lacking, or does not meet your needs, we commission and produce evidence based guides for parents.
We have a range of Guides for Parents and factsheets that we have developed because of your questions. All of our guides are covered by The Information Standard, a recognised quality mark, which indicates that our information is accurate, accessible, impartial, balanced, based on evidence and well-written. Our guides have received excellent feedback with some recently being highly commended by the British Medical Association.
If you would like more information about our new Research and Information Request Service, please get in touch with [email protected].
Please note that this service is no substitute for medical opinion or advice. We aim to provide information that will give you the information you need to help you make informed decisions about the care of your child in consultation with the medical professionals supporting your child.