The New Zealand Down Syndrome Association has launched a wonderful new resource to fill a “huge void” for health professionals when dealing with new parents of a child with Down syndrome.
“We have received overwhelming feedback from parents and whānau that the health professionals they deal with in those whirlwind first days, often do not have the information they need, so we hope that this will help both parties fill this huge void,” says Zandra Vaccarino, the NZSDA’s National Executive Officer.
Vaccarino says that new parents deal with a variety of health professionals, from their midwife, early intervention team and paediatrician to the Plunket nurse and GPs.
“Often these professionals seem to think that one of the other will have given given parents and whanāu specific information on Down syndrome, but often the parents fall in a big information-free abyss,” says Vaccarino.
The National Executive says that the Down syndrome diagnosis is a surprise for many parents so they have lots of questions and need to learn more about Down syndrome as well as navigate where and how to access support.
“Parents are looking for answers and support, but often the first conversations are unnecessarily stressful and very upsetting, when the health professionals have no information – or worse – provide misinformation,” says Vaccarino.
The new brochure, Tips For Health Professionals, provides professionals with resources, key contacts and useful tips on how to approach these vulnerable parents in a respectful and sensitive manner.
“In many cases, doctors, nurses or other support workers will have limited knowledge of Down syndrome and may not be aware of the amazing resources and support organisations available to the parents.”
A large section of the brochure covers the language professionals are suggested to use and what phrases to avoid, as they may be considered offensive or archaic.
The brochure also includes a milestone map specifically for children with Down syndrome.
“Usually parents are given a milestone list for typical children. Having a specific Down syndrome road map will provide parents with realistic expectations about their child’s development and hopefully avoid unnecessary concerns and frustration.”
Health professionals and anyone interested in people with Down syndrome can download Tips For Health Professionals, and other resources on the NZDSA website. The resources are free to download once you have registered your contact details.