«They said nothing in the news about the world falling apart today» (7). How a child’s diagnosis is communicated, and how the shock affects those concerned represent an event and a memory that may influence how the family copes with its new everyday life (8). It is vital that the parents get the information they want, that they understand it and that they remember it afterwards (3). However, the triggering of acute stress reactions may challenge the flow of information. The use of particular approaches may improve the handling of the situation.
Based on a review of the research in the field, Boyd (9) developed the following guidelines for delivering diagnoses in children’s neurology departments: Have a meeting with the parents as soon as possible after the diagnosis has been confirmed – in a private and friendly setting. Ask both parents to be present or in the case of single parents, that they are accompanied by someone who can support them. The person in charge of the meeting should know the family and be an expert on the disorder. All attending personnel should have played a part in the diagnostic process. Communicate the diagnosis early on in the meeting, and then ask the parents about their knowledge of the disorder. Give appropriate information about the prognosis, development, treatment and services. Build hope by referring to experience and research. Listen to the parents when they express their feelings. Give them information about relevant services they can be referred to, and mediate contact with user associations if so desired. Offer the parents a written summary of the information given during the meeting as well as the opportunity to have a further conversation at a later date. At the end of the meeting, the parents should be given the opportunity to be alone in a private room.
Health professionals have a duty to ensure that children receive good information about their diagnosis (Patients’ Rights Act sections 3 – 4 and 3 – 5). An assessment should be made of whether the child should be present when the diagnosis is delivered. A doctor who is well prepared can help to establish mutual understanding and openness by communicating the diagnosis to the family together. If the child accompanies the family to the hospital but is not present during the consultation, plans for how the child is to be looked after should have been made. Parents who have to go to their child immediately after a serious diagnosis has been delivered often find this very difficult (3). It is therefore important that the department has resources available to look after the child if required.
It is essential to provide guidance for parents about how they can talk to the child (also siblings) about the disorder. This is particularly important if the child is not present when the diagnosis is delivered. Many parents are uncertain, and need advice. Children know that they have been examined by the doctor, and they often notice that their parents are upset. The first step in informing the child may therefore be to say that the doctor has found out that he/she has a disorder, and that naturally the parents are sad because of this. The most important information parents give is linked to the symptoms or restrictions the child experiences in daily life and how these are dealt with (10).
Giving information is a process in which health professionals must help the parents to make choices that are right for the family at various stages of life. There are many options between «telling all» and «keeping quiet», and most families learn as they go. If the child has a rare disorder, parents can contact the Norwegian National Advisory Unit on Rare Disorders (NKSD) for advice and guidance (11).
Training can enhance the doctor’s skills in talking to parents and children about progressive disorders (12). It is vital that the department prioritises this. When a diagnosis is to be communicated, the doctor must prepare what to say and consider how their own and others’ reactions can be dealt with (13). As a health professional, it is not unusual to deal with difficult emotions by giving more information (14), but the parents need a doctor who listens and shows empathy (15). In order to be able to do this, support from colleagues is needed. If the doctor suppresses the difficult emotions that arise in challenging meetings with patients, there is a greater risk of subsequent emotional exhaustion than when he/she seeks support (16).