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

Abstract

BackgroundWith 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.MethodsWe 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.ResultsThree 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 supportConclusionsThis 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.

The AIMS home-video method: parental experiences and appraisal for use in neonatal follow-up clinics

“…Parents of premature infants often experience a sudden disruption of the pregnancy, which makes them parents sooner than expected [ 34 ]. Next to this unexpected birth, the medical care is longer and more intensively accompanied by insecurities about their infant’s wellbeing and future expectations than with healthy term-born infants [ 35 ]. When combined with becoming a parent for the first time, it seems natural to have feelings of uncertainty and to need information.…”

“…Parents appear to feel uncertain and vulnerable when they lack information on how to enhance their child’s care [ 39 ]. In response to this uncertainty, it seems natural that parents of premature infants express their need for reassurance and confirmation that their child is doing well and that they are doing the right thing [ 35 ].…”

“…A relevant lesson learned from this study is that, when giving feedback, it is very important to tell parents what their child can do, as the parents of the infant with suspected cerebral palsy stated. It is important to concentrate on the strengths of a child, with positively phrased messages, and not just focus on weaknesses [ 35 , 36 , 46 , 47 ]. This is in agreement with the strength-based principle, whereas research shows that positive communication enhances parents’ confidence and reduces their anxiety.…”

Continuity of Care for Preterm Newborn Discharge From the Neonatal Unit: Family Experiences

“…Results of several studies suggest a strong relationship between parental experiences and continuity of follow-up in health services, as well as the quality of bonding and care offered at home 12,13 . Follow-up programs that use early interventions focused on increasing mothers' confidence in their parental abilities can promote maternal bonding and attachment as well as the quality of life of families of PTNB children 12 .…”

Continuidade Do Cuidado Ao Recém-Nascido Pré-Termo Egresso Da Unidade Neonatal: Vivências De Familiares

“…Resultados de diversos estudos sugerem forte relação entre as experiências parentais e a continuidade do seguimento nos serviços de saúde, bem como a qualidade do vínculo e cuidado ofertado no domicílio 12,13 . Programas de acompanhamento que utilizam intervenções precoces com foco em aumentar a confiança das mães em suas habilidades parentais podem promover vínculo e apego materno bem como a qualidade de vida das famílias de crianças RNPT 12 .…”