Informing families
Information, help and advice for professionals informing families of a diagnosis of Down syndrome
In this section you will find information on how to access best practice guidelines for communicating with families and details about training that Down Syndrome Ireland offers medical professionals.
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Training
The way in which parents are first told that their son or daughter has a disability can stay with them for the rest of their lives. We recognise that this can be a difficult task for medical professionals and it is one that they can struggle with.
Down Syndrome Ireland offers training, advice and support to medical professionals in how to deliver news in an appropriate manner
The training is carried out by our Clinical Research Nurse Fiona McGrane. She is the only nurse in Ireland who specialises in Down syndrome.
Fiona currently provides this training to all Trinity College medical graduates on their paediatric rotation and to student midwives.
Please contact us on 01 4266500 or email info@downsyndrome.ie if you would like more information or would like to schedule a training session.
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…more than medical
While there is an abundance of medical information about Down syndrome, there is not a lot which provides real insight into the realities of having a child with Down syndrome.
Our “… more than medical” booklet challenges outdated ideas about Down syndrome and instead provides an insight into the realities of family life with a baby, child, teenager or adult with Down syndrome in Ireland today.
“… more than medical” is a resource for parents with a pre or postnatal diagnosis of Down syndrome for their baby.
It is also an essential tool for professionals and healthcare workers to ensure complete and balanced information is provided to all parents.
We joined forces with Rebekah Docherty and Michelle Clark from Lose the Label CIC – who are both parents of children with Down syndrome, to develop ‘…more than medical’.
The booklet includes a combination of experiences from the charity’s family and adult members from around the country.
The booklet is distributed free-of-charge to maternity and children’s hospitals across the country and HSE Early Intervention Teams.
If you would like to order copies, please contact us at info@downsyndrome.ie or call us on 01 4266500.
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Informing families
The Informing Families website provides information for parents and professionals at the time of a child’s diagnosis with a physical, sensory or intellectual disability or when there are concerns about a possible diagnosis.
On www.informingfamilies.ie, professionals can access best practice guidelines for communicating with families, and practical tools and materials to help implement these recommendations.
The website also includes a one-hour e-learning programme to support professionals in their practice when communicating sensitive or difficult news to families.
Down Syndrome Ireland consulted in the development of the resources for this site.
Downloads
Upside Down, The Story of My Brother James Liadh Hanley
Here is a wonderful book called Upside Down, The Story of My Brother James written by a young girl called Liadh Hanley. In the book, Liadh shares her experiences of having a brother with Down Syndrome. The initial aim of the book is to teach siblings and children how to appreciate and respect those with Down syndrome. We think this book could help all members of families with Down Syndrome as well as prospective parents.
I am a professional
Download
‘…more than medical’
“…more than medical” provides an insight into the realities of family life with a baby, child, teenager or adult with Down syndrome in Ireland today. It’s about reality and providing balanced, complete information for new families.
I am a professional
Download
New Parent Booklet
We have compiled a booklet specifically for new parents which covers a whole range of relevant topics including the emotions you might be experiencing, what to tell family and friends, tips on how to get on with the job of bringing up your baby, useful information on your new baby’s health and how to manage it (with a list of questions to ask your doctor), details on the supports you may be entitled to and of course our network of local branches so you can find the nearest support network to you.
