Tell us Your Experience of how Newborn Screening Results for Sickle Cell and Thalassaemia were Communicated
The Sickle Cell Society in partnership with the UK Thalassaemia Society and NHS Sickle Cell and Thalassaemia Screening Programme are looking for parents to consult. We are interested in learning more about people’s experience of receiving newborn screening results. This includes those whose baby is a carrier (i.e. trait) or has full-blown sickle cell disease or thalassaemia.
We are also looking for individuals who have not yet had children but who are from communities at high-risk of carrying the sickle cell or thalassaemia gene.
The consultation will help us think about the best way to communicate newborn screening results to parents and make sure we minimise any potential long-term negative impact news of the results might have. It will also let us know the type of information and support various people will find useful after receiving their baby’s results.
Due to the COVID-19 pandemic, this consultation will be conducted by online small-scale focus group discussions of 6 -12 people at a time. We will do these using Zoom or Microsoft Teams. We would like to recruit people who fall within any of the following categories:
- Mothers whose babies are up to two years old and the baby’s result was sickle cell / thalassaemia carrier or full-blown sickle cell/thalassaemia
- Fathers whose babies are up to two years old and the baby’s result was sickle cell / thalassaemia carrier or full-blown sickle cell/thalassaemia
- People who are planning children in future and who themselves might be carriers of a gene for sickle cell or thalassaemia.
The group discussions will last up to 90 minutes and each participant will have opportunity to give us their views. In gratitude, we plan to give participants a small gift voucher for their time.
All data collected will be confidential and only the project team will know the identity of participants. Your information will not be shared with anyone else. You will be asked to give your consent, as we will record the online session for our use. This recording will be destroyed once we have the information we need.
You will have an opportunity to see the report we produce from your feedback. This will not contain any information that will identify you. Your contribution will be anonymous.
If you, or anyone you know fit the criteria and would like to participate or need further information, please contact:
Iyamide Thomas (Ms)
NHS Engagement Lead
Sickle Cell Society
Tel: 020 7635 9328 / 07841 558611 (m)