National Implementation of the Informing Families Guidelines

Communicating the news to a family that their child has, or may have a disability can be an emotionally challenging and difficult task. Research has consistently shown the importance of this communication and its effect on the experiences of families. It is often the beginning of the parent-professional relationship and it is very important to establish trust from the start of this relationship.

Recognising the importance of the communication of the news of a child's disability, a set of evidence-based best practice guidelines was developed in Ireland by the National Federation of Voluntary Bodies (NFVB) to help professionals in this task, following a significant national research project undertaken with families. The guidelines provide practical recommendations in areas such as communication skills, ensuring the right people are present in an appropriate environment, teamwork, and advice on information provision. 

You can find a range of resources and supports on this website including:

• National Best Practice Guidelines for Informing Families of their Child’s Disability
• ‘Words You Never Forget’ 24 minute DVD
• 1 hour e-learning module certified by the HSE
• Traffic Lights – Quick Reference Guide to prepare in the moments before delivering difficult news
• Consultation and Research report (describing the evidence-base for the Guidelines)
• Train the Trainers course and materials

Over the course of 2017, the Informing Families Project - which was developed by the National Federation of  Voluntary Bodies - is being supported by the HSE in rolling out an implementation strategy for the National Best Practice Guidelines for Informing Families of their Child’s Disability.

In the intitial stages, the Informing Families Project will provide training in a range of maternity, paediatric and early service settings to underpin the implementation process and will work with the HSE ensure that information is provided to all key stakeholders.

If you wish to know more or your service wishes to undertake further training, please click here to contact us.

The implementation project has received funding from the National Lottery Fund at the Department of Health.