Healthcare professionals’ and parents’ experiences of the confirmatory testing period: a qualitative study of the UK expanded newborn screening pilot

• DOI: 10.1186/s12887-017-0873-1
• Publication Date: 2017-05-08T13:30:45Z
• Authors: Louise Moody; Lou Atkinson; Isher Kehal; James R. Bonham
• Keywords: Thematic Analysis; Health Professionals

With further expansion of the number conditions for which newborn screening can be undertaken, it is timely to consider impact positive results and confirmatory testing period on families involved. This study was undertaken as part a larger programme work evaluate Expanded Newborn Screening (ENBS) in United Kingdom (UK). It aimed determine views experiences healthcare professionals (HCPs) parents communication interaction during following result. Semi-structured interviews were with children who had received ENBS result HCPs been involved diagnosis support parents. Ten 11 took in-depth interviews. Questions considered journey from through confirmed between that they experienced. Key themes identified thematic analysis. The point elements within path are difficult could developed improve experience. These include way communicated parents, rapid turnaround results, offering consistent approach, exploring interventions family relationships reviewing workload scheduling implications professionals. As technology enables conditions, there an increasing need mediate potentially negative effects families. findings this benefit