Informing families that their child has a disability is never an easy task, but now some help is at hand.
On Monday 28th June, the National Federation of Voluntary Bodies (FedVOL) and Equality, Disability and Mental Health Minister John Moloney launched the Informing Families Project.
The Informing Families Project has culminated in the development and launch of a range of tools and materials designed to support best practice at the time of a child's diagnosis with a disability. The tools include FedVOL's national guidelines on the best way to communicate the sensitive news of a child's disability to their family.
As well as the guidelines an Informing Families website has been developed which contains practical information and advice for health professionals and families. It also contains an e-learning module especially designed for health professionals.
Designed and built by online learning specialist, Aurion Learning, the Informing Families e-learning programme is suitable for all professionals charged with informing families that their child has a disability. It starts by examining how important good practice is to families, goes on to outline the national best practice guidelines and then asks learners to assess their current abilities.
The e-learning programme includes several audio visual clips in which parents and professionals share their real-life experiences allowing learners to get a real insight and empathise with families. It also includes interactive learning content including real-life exercises, question and answer sessions and self-assessment and reflection exercises to keep learners active and involved in the learning. Health professionals who complete the e-learning programme will receive a certificate of achievement from the Health Service Executive and FedVOL.
Speaking at the launch, Alison Harnett, FedVOL Project Coordinator said:
"Breaking news of a child's disability can cause a huge amount of distress for families, with some remembering 20 years later how they were first told. Doctors used to believe that giving the worst-case scenario was the best thing to do, instead of acknowledging any uncertainty of what the child was capable of doing and working with the family.
We are discouraging professionals from using terms like 'this Down Syndrome child'. Instead we are encouraging them to use the child's name first, such as Ben, who has Down Syndrome We want them to give positive, realistic messages with hope.
We are not saying that they should give a sugar -coated message. We want the truth to be told but do not want professionals to feel they have to give the worst-case scenario. We want families to have a positive and realistic understanding that people with disabilities live very full lives."
Dr. Maureen Murphy, Director of Aurion Learning said: "We are very proud to have been part of this very important and worthwhile project. We encourage families and health professionals to check out the Informing Families website and we especially encourage relevant health professionals to give our Informing Families e-learning programme a try."
To find out more about Aurion Learning contact Noleen Turner, Press Office, +44 28 9064 3211 or email noleen.turner@aurionlearning.com
|
Homepage
