Development of Best Practice Guidelines

The Informing Families Project, based in Ireland, developed evidence-based Best Practice Guidelines for Informing Families of their Child's Disability. These were based on a comprehensive research and consultation programme. 

The Guidelines were developed by the National Federation of Voluntary Bodies, an umbrella group of voluntary intellectual disability service providers in Ireland. For this project, the National Federation worked with a wide range of stakeholders to ensure that the guidelines are cross-disability in nature, covering physical, sensory, intellectual disabilities and autistic spectrum disorders.

Following significant consultation and research with families of children with disabilities and with professionals in various disciplines who inform parents that their child has a disability, or may have a disability, the Guidelines were published in 2007. The guidelines provide support to professionals in the communication skills required to sensitively provide the diagnosis of a child's disability to the family, whether that happens at birth, in utero, or evolves over the first weeks, months or years of a child's life.

Implementation of the Guidelines

Following the publication of the best practice guidelines, a pilot implementation project was undertaken in the Cork region, covering hospital, community and disability service settings. A report of the outcomes of the implementation project was published and the project was awarded the Taoiseach's Public Service Excellence Award in 2010. A roadmap for national implementation was developed as part of this process.

Publication of article on Training Evaluation

As part of the Cork Pilot Implementation Project, a range of professionals from hospital, community and disability service settings and from a range of disciplines were provided with training in the Best Practice Guidelines for Informing Families of their Child's Disability. A two-hour classroom based programme was designed based on the findings of the research and using video showing the stories of two families who had received the news of their child's disability; one in a way that was consistent with best practice and one in a way that was not. Parent and Chairperson of the Cork Implementation Project, Ms. Katherine O'Leary, provided input into the training from the perspective of a family member.

Each training session was evaluated using a before and after questionnaire survey, and the results were analysed and written up into a research article.

The peer-reviewed article; "Evidence-based training of health professionals to inform families about disability" was published in the Archives of Disease in Childhood, (the paediatric journal of the British Medical Journal group), in May 2013.

The reference for the final article is:
Harnett A,, et al Arch Dis Child 2013;98:413–418. doi:10.1136/archdischild-20 and the title is "Evidence-based training of health professionals to inform families about disability"

You can contact alison.harnett@fedvol.ie for further information.