Tell us Your Experience of how Newborn Screening Results for Sickle Cell and Thalassaemia were Communicated
Help improve the sickle cell screening programme by joining our online focus group and receive a gift voucher as a thank you. We are looking for people who have sickle cell or trait and have not yet had a child.
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 (trait) of a gene for sickle cell or thalassaemia.
