Table 1.

Summary of participants’ priorities to improve communication.

Category	Parents’ priorities	Health professionals’ priorities
Changes to NBSa card	How the parent would like to be contacted Significant other’s contact details on the card (as well as the mother’s) Whether a translator is needed Email address of the parents	Inclusion of a question on the NBS card asking the parents how they would like to be contacted: Skype, telephone, or email Addition of a parent’s email address to the NBS card
Initial communication	Being told by the same person they will see at the first clinic appointment If parents are given their child’s result over the telephone, care should be coordinated so that they can speak to a health visitor (registered nurses or midwives who have undertaken additional training and work mainly with children from birth to 5 years and their families) or midwife after for support (they do not need to have knowledge of the condition) Parents to be told who they can or should bring to the first clinic appointment	Templates for communication to clinical teams and initial communication to families that should be condition specific Information for families about who should attend the initial clinic appointment
Follow-up communication	Parents to be emailed details of the first clinic appointment Information for family and friends Being signposted at this stage with trustworthy and reliable resources or websites	Following delivery of the positive NBS result by phone, email parents with appointment letter, directions, and condition-specific leaflet; this can be done by administrators or the CNSb Information resources for families and extended families
Service provision	Financial support for families to attend the initial clinic appointment	A centralized system for CHTc Formulation of diagnostic services especially out of hours (so laboratories can conduct confirmatory testing over the weekend) Financial support for families to attend the initial clinic appointment

^aNBS: newborn bloodspot screening.

^bCNS: clinical nurse specialist.

^cCHT: congenital hypothyroidism.