A new comprehensive guideline for the provision of initial information

Initial information refers to information given to a family when family members encounter an illness or disability of their child or foetus. Initial information is also provided in a situation where the child or the foetus is diagnosed with a bodily variation that affects gender features.

As one of the measures in the previous government term’s implementation plan for the National Child Strategy, the Finnish Medical Society Duodecim drew up a “Hyvä käytäntö” (Best Practice) consensus guideline for the provision of initial information. The guideline has now been published and can be read on Duodecim’s website.

The Hyvä käytäntö guideline contains recommendations based on research and other information and it has been drawn up with the principle of consensus. The principle of consensus is suitable particularly for situations in which evidence obtained from scientific research has to be supplemented with expertise gained by experience.

About the content of the guideline for initial information

Although the consensus guideline deals with the provision of initial information only in the case of very young children and foetuses, the principles of the guideline can still be applied to situations in which children are older than the target group. Initial information also includes informing a child or young person about their illness, disability or bodily variation that affects their gender features. In future, Hyvä käytäntö guideline is therefore required for how to give initial information to children and young people. The provision of initial information to them is a separate area requiring specific skill and understanding. Regrettably, it was not possible to examine this area in depth within the timetable for preparing these recommendations.

A large number of a wide variety of different actors with experience in initial information and in giving and receiving it have been involved in the preparation of the guidelines for initial information. For example, they include healthcare professionals, official bodies and representatives of the civic society, among them disability organisations, child and family organisations and other human rights actors.

For example, the guideline deals with why it is important to provide good initial information, how the professional should prepare for giving initial information and how initial information should be given. The guideline also highlights ways in which the provision of initial information can support the development of a safe attachment and interaction relationship between the parents and the child. In addition, initial information on bodily variations related to the child’s gender features is discussed as an entity of its own.  

Last spring, the draft recommendations for the provision of initial information were sent for an open round of consultation. Almost 50 comments were received, which were utilised in finalising the guideline. As a rule, those who commented considered the consensus guideline necessary and important. This is perfectly described by a comment given by one of them: “The guideline is extremely comprehensive and good, it will help professionals to operate with the same quality in the whole country in situations where initial information is provided.” In future, the funding required for updating and reviewing the Best Practice guideline for the provision of initial information should be ensured.

Why is the consensus guideline for initial information needed?

The provision of initial information is a very challenging situation not only to the person receiving it, but also to the person providing it. A uniform nationwide model is important so that families can have help and support on an equal basis when facing an unexpected and challenging life situation. High-quality initial information is also important for establishing trust between the healthcare professionals and the families. It is a necessary precondition and foundation for good cooperation.

According to studies, the way in which initial information is provided has a major impact on the relationship between the parents and their child in the early interaction. Initial information that has been provided well helps the family both understand the situation and make use of their own resources in an unexpected and challenging life situation. It is about the wellbeing of the entire family and about the realisation of the child’s rights.

Positively, realistically and by maintaining hope

Parents have reported that especially providing information positively, realistically and by maintaining hope is one of the most important aspects in the provision of initial information. It is largely a question of good and open interaction between the professionals and the parents.

Parents have often said that keeping up hope is a particularly important element in interaction. It helps the family to cope. Parents want to hear about the different opportunities for the child to develop and about support and help that will enable the child to have a good life. Like one healthcare professional aptly put it in their comment:

“Initial information about the difficulties in the child’s future may affect the parent’s attitudes in relation to their child. It is therefore important to also emphasise the child’s individual strengths when initial information is provided. How important, valuable and loved the child is in spite of their own special challenges. It is important to help the parents see the child’s challenges as only one part of daily life with the child, not as something that defines the child as a whole.”

• Keywords: child rights child strategy wellbeing