First information refers to information given to families when they first learn about the illness, disability, or physical variation of their child. The purpose of the first information is to provide parents with information about their child's health status and the kind of support the family can receive in their new life situation. First information is provided by healthcare professionals working in health care services, maternity and child health clinics, maternity hospitals, and disability associations.
First information often includes the following things:
- Medical information: information about the impact or prognosis of the child's special needs.
- Rehabilitation: information about rehabilitation support for the wellbeing of the child.
- Forms of support: information about forms of support for families to make everyday life easier.
- Third sector services: information about organisations and associations that provide a wide range of peer support, advice, training, and events.
If your child's illness, disability, body variation or other special need is diagnosed through testing and screening during pregnancy, you will receive first information while you are still expecting. If the child’s special needs are identified at birth, first information will be given at the maternity hospital.
A child’s special needs may become apparent at a later stage, such as when an examination at the child health clinic finds that the child’s development may not be following a typical pattern. In such cases, you will be referred to further examinations. It may take time to get a diagnosis, which will affect how long it will take for you to receive the relevant first information.
The first information about a child’s situation is not just their first diagnosis. Instead, it consists of all the encounters with the different caregivers, and it may span several years. For example, if your child receives new diagnoses later on, that also counts as receiving first information.
It is natural for you to want to look for more information on your own. You can find first information guidebooks on many different diagnoses online.