A journey through follow‐up for neurodevelopmentally at‐risk infants—A qualitative study on views of parents and professionals in Liverpool

BACKGROUND: With improving neonatal intensive care, more preterm babies or those with hypoxic‐ischaemic encephalopathy are surviving the newborn period. These babies are at high risk of neurodevelopmental delay. No studies to date have looked at the views of parents and professionals in relation to the processes of follow‐up for these infants. METHODS: We conducted a qualitative study in order to understand the views of parents of preterm babies or those with hypoxic‐ischaemic encephalopathy as well as the views of professionals who manage and support these families. Parents were recruited through general neonatal follow‐up clinics, neonatal nurse liaison services and community child health clinics and professionals through the neonatal unit and neurodevelopmental paediatrics services. We conducted in‐depth interviews using an open‐ended topic guide, which were audio recorded, transcribed and coded. We conducted a thematic content analysis where themes were inductively highlighted and grouped by consensus in order to conclude on major themes and subthemes. RESULTS: Three major themes were identified for parents and professionals. These were the following: (a) What is the future, (b) What is the journey and (c) Who can help me? Parents wanted better information earlier about the prognosis and diagnoses through face to face, honest consultations with follow‐up information available on the Internet. The most important requirements for follow‐up clinics were honesty, reassurance, consistent pathways of follow‐up and the need for a lead professional in the process. Alongside the follow‐up process, there was a need for support groups and psychological support CONCLUSIONS: This study highlights the desire by parents for early information on the likely long‐term outlook for their babies but the need to ensure that the information and support, which is given, is provided appropriately and with consideration in order to provide the best care of the whole family.