Table 2 Recommendations for improving communication and interaction
A summary of emerging recommendations and areas for future research |
Pre-screening • Awareness raising of the ENBS conditions amongst parents, the public and wider HCP community. |
Initial contact • Development of exemplar communication scripts for the first call to parents to relay screening results and / or arrange an appointment; co-design of content with parents and HCPs. • Ensure direct contact between a specialist and the family the same day the parents are notified of the positive screening result • Ensure access to advice and support during the period spent waiting for a meeting with a specialist. • Development of information related to true and false positive results to be received by parents at the point of an initial screening result being relayed; co-design of content with parents and HCPs. • Ensure the availability of a neutral translator for relaying the information to parents whose first language is not English. |
Waiting for a confirmatory diagnosis • Rapid turnaround of confirmatory results, ensuring that accurate timeframes are given to the parents. • Ensure access to support systems during the waiting period. • Provision of clear, actionable information in verbal, written and online mobile formats that can be easily shared. • Provide clear guidance and maternal support around breastfeeding. • Encourage personal support from a friend or wider family especially if there is only one parent available. |
Long-term support • Ensure availability and referral to psychological support where required once a diagnosis is reached. • Development of a toolkit that provides condition specific information for non-specialist clinicians to provide support to families from the screening test onwards. • Development of an online self-management resource for parents that provides condition specific information and support for parents from screening through to ongoing condition management. |
System support mechanisms • Consider how a consistent approach and service can be offered to support families and embed evidence-based guidelines whilst taking into account local context and resources. • Review the resource implications of screen positives and conditions identified through screening, to make recommendations regarding resource allocation. • Consideration of adaptable workload models and scheduling to cater for the management of screen positive cases whilst minimising the impact on the HCPs involved. |
Future research • Explore factors affecting diagnostic acceptance and how these factors can be affected by clinical interactions. • Explore psychological interventions to support family relationships whilst managing a child with a long-term condition. |