Table 4.

[6]

What do expectant parents find helpful?

- Accurate information about the medical condition, while acknowledging the uncertainties

- Being listened to, and being given space and time to process information and ask questions

- Signposting to reputable online sources of information

- Opportunities to learn more about lived experience of the SCA

- Acknowledgement of the importance of individual life circumstances in how a prenatal diagnosis is received

- Prognostic information that provides a picture of what ‘real life’ with a child with an SCA would be like with a normal fetal ultrasound.