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Charlie Ayling

Exploring parents’ and health professionals’ experiences of screening for Severe Combined Immunodeficiency (SCID)

Background: Currently, in the UK, babies have a blood test called newborn bloodspot screening (NBS) to test for nine health conditions. Some countries have also introduced NBS for Severe Combined Immunodeficiency (SCID). However, there are still some questions that need answering before it can be introduced as part of National NBS in the UK. The UK National Screening Committee (UKNSC) recommended that an ‘evaluation’ should take place to try to answer these questions. The evaluation will take place in England and involve about two thirds of babies born from September 2021 to August 2023.

Our Aim: To explore parents’ experiences of screening for SCID.

Methods: We will include families from the point when screening information is shared with them through to the child’s fifth birthday.

1. Parents who have received a variety of outcomes for NBS will be given a postcard. This will invite them to record their initial thoughts and feelings towards NBS and also, if they wish, their contact details should they be willing to be sent further information about the rest of the study.

If parents provide their details, they will be sent an information sheet about the rest of the study which will involve:

2. An interview during their child’s first year of life and when their child is 5 years old
3. A short survey approximately every 3 months asking parents about any contact they have had with health professionals in relation to their child during the first two years of their life.
4. Interim interviews when their child is aged 1, 2, 3 and 4 years of age

(interviews will explore parents’ experiences of NBS in more detail and include standard questionnaires that have been used in other studies to assess how people feel about their health and well-being).