Events

Men Sickle Focus Group

MEN with sickle cell or trait WANTED! If you have a child under three years or no children at all then we want you to take part in an online focus group. For your help you will get a thank-you gift voucher! Register today

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.

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