The list below details the publications, tools and materials available from the Informing Families Project. For further information on the development of these materials, visit the Background to the Project and National research of the Informing Families Project sections of this website.

Publications

National Best Practice Guidelines for Informing Families of their Child's Disability

Best Practice 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 best practice guidelines was developed in Ireland by the National Federation of Voluntary Bodies to support professionals in this task. The guidelines are robustly evidence-based, and came about through a substantial national research project. 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. The Guidelines were launched by Minister for Health and Children, Mary Harney in December 2007 and have received welcome and endorsement from professional bodies, parent and family organisations and educational institutions. The guidelines were implemented in a two year pilot project in the Cork Region and received a Taoiseach's Public Service Excellence Award in July 2010.
Price: Click here to download free of charge. Printed version €2.30 (discount availble on bulk orders).

Consultation and Research Report of the Informing Families Project

In 2007 a national survey undertaken by the Informing Families Project found that there was a gap between the satisfaction levels of parents and professionals in relation to how families are informed of their child's disability. While just 34.6% of affected families in Ireland were either ‘Satisfied’ or ‘Very Satisfied’ with the way they had been informed of their child’s disability, 62.2% of professionals indicated that they were ‘Satisfied’ or ‘Very Satisfied’ with their disclosure practice. These findings indicated that there is a significant gap between how parents and professionals perceived the quality of the disclosure and underlined the need to address the issues leading to parental dissatisfaction.This research led to the development of the National Best Practice Guidelines for Informing Families of their Child's Disability.

The research undertaken to develop these guidelines is presented in this comprehensive Consultation and Research Report. The research took place in three stages; a comprehensive national and international literature and policy review; a series of 22 focus groups with parents and professionals; and a national survey of over 500 families and 1500 professionals.

Click here to download the Consultation and Research Report of the Informing Families Project
Price: Free to download. €20 per printed copy (Discount available on bulk orders)
 

Translating from Research to Practice - Informing Families of their Child's Disability The Cork Pilot Implementation Project

National Best Practice Guidelines for Informing Families of their Child’s Disability were developed by the National Federation of Voluntary Bodies and launched by Minister for Health and Children, Mary Harney TD in December 2007. These guidelines were based on a significant consultation and research process and were widely endorsed by professional bodies, parent and family organisations and educational institutions.

Following the launch of the Guidelines the Informing Families Project embraced the challenge to translate research into practice through a two year pilot implementation of the guidelines in the Cork Region, across hospital, community and voluntary disability services. The project was guided by a Steering Committee of professionals from medical, nursing and allied health backgrounds and was chaired by a parent of two children with disabilties. The purpose of the pilot project was to gain knowledge to inform national roll-out. The report of the Cork Pilot Project details how the implementation was carried out and provides a range of practical tips and tools for implementing the Guideilnes. The pilot project was successfully implemented and was announced as one of the recipients of the Taoiseach’s Public Service Excellence Awards 2010.

Click here to download the Cork Implementation Project Report
Price: Free to download. €12 per printed copy (discount available on bulk orders)  

Tools and Materials

Words You Never Forget DVD

This 24 minute documentary film, produced by the Informing Families Project has been listed by many participants in the Informing Families Training Programme as one of the most valuable elements of the training received. It features the stories of how two families were informed of their child's disability; one family in a helpful way and another in a way that added distress.Contact info@informingfamilies.ie to order a DVD copy. Price: €10 (discount available on bulk orders)

'Safe Cross Code' poster

Safe Cross Code Poster 
Developed in conjunction with medical, nursing and allied health professionals working in the area of communicating with families, this one page A4 poster is a quick reminder of the key points of best practice that can be consulted before communicating with a family about their child’s diagnosis. Available to download and print for free by clicking the link above, or you can order a pre-laminated copy from info@informingfamilies.ie . Price: €2.50 per laminated copy.

E-Learning Module

Following the successful classroom-based training piloted through the Informing Families Project, an eLearning module was developed to provide professionals with alternative access to the 'Informing Families' training programme. The  eLearning module can be followed at a time and location convenient to the learner.

The module consists of a range of interactive learning tools structured into a programme that can be taken over a series of visits or in one session, according to the learner's preference. The tools used to inform participants on the central messages of the National Best Practice Guidelines for Informing Families of their Child’s Disability include video, research findings, practical recommendations for best practice, exercises applicable to each learner’s own setting and circumstances and resource materials. On completion of the module, which takes approximately one hour, the learner can  can take an assessment. A certificate of completion will be awarded when the assessment is passed. Click here to access on the Informing Families Project eLearning Module.
Price: Single user free of charge. Group usage contact info@informingfamilies.ie

To order any of the publications, tools or materials above contact info@informingfamilies.ie  or telephone: 091 792316