Participants needed!
PARTICIPANTS NEEDED!
YOU COULD WIN A £10 AMAZON VOUCHER!
Have you got or have you had a child born with Full Trisomy 18 / Edwards Syndrome?
Do you want to share your experience and have your voice heard?
Do you want there to be more research and support for parents?
Can you spare about 15 minutes of your time?
Are you over the age of 18?
Can you read and write English?
If the answer is YES, then you’re in the right place! My Masters Degree Research Project Explores Timing, Social Support, Loneliness and Coping among Parents who have or have had a child born with Trisomy 18.
You will be asked to answer demographic questions followed by some questions about perceived social support, loneliness and coping.
To take part, follow this link: https://derby.qualtrics.com/SE/?SID=SV_3wxZko7PDOkUanH
If you would like any more information, please contact Meghan Linscott on m.linscott1@unimail.derby.ac.uk, Dr Amy Baraniak on a.baraniak@derby.ac.uk or Prof David Sheffield on d.sheffiled@derby.ac.uk
I just need to say here in 1988 our family did not have a computer! There was no need at that time - not even sure if they were readily available. Finding information on Trisomy 18 was crucial to me so it was Parent to Parent New Zealand, I contacted in the first instance (when I found the time). I was put in contact with a New Zealand family who were very generous and happy to share all they knew and had learnt. It was many years later that I had access to the internet and found out that overseas many children were surviving and that families were sharing all they learnt with each other. I did learn about the SOFT network / support and used to wait eagerly for their newsletters from America...they taught me so much...all the stuff I needed to know.
-
Tangible information
Through Parent to Parent NZ - we were given contact with a family who shared information we so desperately needed
-
Some concrete detail - at last
this information was all so important
-
Hope Facts!
Information like this gave us hope!
At last we had some facts instead of guesses
Benjamin Helfritz
hey! some more "hope facts"!? :) your doughter seems not to have such a strong formation of trisomy 18. my brother Matthias got a partial trisomy 18 and he is 35 now :) mailme :) greets from germany
Josie Murrell
yes our pediatrician did question the results but it was full trisomy 18 Melissa had - she taught me heaps about life - great to hear about your brother doing so well!