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

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.