A mixed methods study of the follow up of extremely preterm babies in the North East of England

Abstract

1. Background Neonatal intensive care medicine has improved considerably over time, leading to increased neonatal survival, and improved survival of preterm babies (babies born before 37 weeks gestation). In 2012, the WHO declared their commitment to reducing the mortality and morbidity related to prematurity by several interventions, including updated approaches to community-based follow up care for preterm babies. According to the Office for National Statistics (ONS), 2,490 babies were born in England and Wales in 2018 between 23- and 27- weeks gestation, accounting for approximately 0.3% of all live births. The 2017 National Institute for Health and Care Excellence (NICE) guideline made recommendations for the developmental follow up of children and young people born preterm and acknowledged the conditions linked to preterm delivery. The follow up of preterm babies determines the baby’s outcomes, their parents’ needs, and informs planning of health and social care resources. Previous research on barriers and facilitators to neonatal follow up showed that the birth of a preterm baby is a stressful event, for both mothers and fathers. Parents develop a different pattern of parenting, stemming from the concept of increased vulnerability of the preterm baby. The communication between parents and health professionals is important, and poor communication increases parental stress levels. Studies underlined the relevance of the relationships established between parents and neonatal staff to parents’ experiences. 2. Aim This study used a mixed methods design to assess the neonatal follow up of extremely preterm babies, focusing on attendance rates in relation to morbidities and demographic characteristics, as well as parents’ and health professionals’ perceptions of the neonatal follow up.3. Methods This study involved two phases. Phase one was an analysis of demographic, morbidity, mortality, and 2- year neurodevelopmental outcomes data of a cohort of babies born before 28 weeks gestation in the North East of England, over a 12-month period between July 2015 and June 2016, recorded in the Badger database. Phase two was a qualitative study of parents’ and health professionals’ (HPs) views, perceptions, and experience of the follow up of extremely preterm babies. Parents were recruited to the study during their attendance for their baby’s follow up appointments and were interviewed using a topic guide. Seventeen semistructured interviews were carried out with 23 parents of babies born before 28 weeks completed gestation, between January and December 2018. Thematic analysis based on the Braun and Clarke model was used. Twenty one-to-one, semi-structured interviews were carried out with HPs involved in the follow up care of preterm babies, between October and December 2018. Data were analysed using thematic analysis.4. Results The recruitment rate for phase one was 61% of the eligible babies; 86.2% of the babies included were born after 24 weeks gestation, with a mean gestation age (GA) of 25+3 weeks and a mean birth weight (BW) of 805 grams. More than three quarters of babies were discharged home on oxygen. Of the cases where information was available, half of the babies showed developmental delay, with half of these cases showing moderate to severe delay. There was no formal diagnosis of cerebral palsy recorded in the Badger database. The analysis of the parents’ interviews identified two key themes: ‘Emotions’ and ‘Here and now’. The first theme, ‘Emotions’, included three subthemes: ‘The emotions related to the preterm birth - a rollercoaster’, ‘The post-traumatic stress syndrome’ and ‘The overprotective parent’. Following the birth of their preterm baby, parents experienced mixed and contradictory emotions, compared to a rollercoaster, which may contribute to developing symptoms suggestive of post-traumatic stress syndrome. Parent participants developed an overprotective type of parenting, as previously described in literature. 4. Results The recruitment rate for phase one was 61% of the eligible babies; 86.2% of the babies included were born after 24 weeks gestation, with a mean gestation age (GA) of 25+3 weeks and a mean birth weight (BW) of 805 grams. More than three quarters of babies were discharged home on oxygen. Of the cases where information was available, half of the babies showed developmental delay, with half of these cases showing moderate to severe delay. There was no formal diagnosis of cerebral palsy recorded in the Badger database. The analysis of the parents’ interviews identified two key themes: ‘Emotions’ and ‘Here and now’. The first theme, ‘Emotions’, included three subthemes: ‘The emotions related to the preterm birth - a rollercoaster’, ‘The post-traumatic stress syndrome’ and ‘The overprotective parent’. Following the birth of their preterm baby, parents experienced mixed and contradictory emotions, compared to a rollercoaster, which may contribute to developing symptoms suggestive of post-traumatic stress syndrome. Parent participants developed an overprotective type of parenting, as previously described in literature. The second theme, ‘Here and now’, included four subthemes: ‘The storytelling’, ‘The coping mechanism’, ‘The impact of being born early’ and ‘The value of the follow up’. Future parents expected a normal term pregnancy, followed by a normal birth; the normality was interrupted by the onset of preterm labour. This interruption marked the beginning of a different experience, the quality of which impacted on the bonding and relationship between baby and parents, and the relationships between parents and HPs. Parents reported that follow up offered reassurance. The analysis of the HPs’ interviews identified two key themes: ‘Communication’ and ‘The Child Not Brought’. The first theme, ‘Communication’, included two subthemes: ‘The Journey’ and ‘The multi-disciplinary team post discharge’. The HPs described the experience of the birth and the follow up of a preterm baby as a journey and continuity of care was a marker of quality. HPs understood that the follow up offers reassurance and support to parents. There was a diversity of job roles of HPs involved in the care and follow up of preterm babies, leading to the formation of a multi-disciplinary team (MDT). Communication occurred in every direction between the members of the MDT, in many ways (written/verbal, formal/informal, paper/electronic). The second theme, ‘The Child Not Brought’ included three subthemes: ‘The impact on the baby’, ‘The NHS point of view’ and ‘Why do parents not attend?’. HPs suggested several potential reasons why parents may not bring their child(ren) to the follow up appointments: parents may not understand the role of the follow up, especially if the child is well; parents fear bad news; families may have a busy life, have too many appointments or have just seen another HP; communication breakdown (related to system or human factors); neglect; distance and travel; psychological issues (fear to leave the house, bad memories linked to the hospital environment). 5. Discussion Findings from this research provide important insights into the views and experiences of parents of preterm babies with regards to their baby’s follow up appointments. The birth of a preterm baby is a stressful event; parents develop a different pattern of parenting, stemming from the concept of the increased vulnerability of the preterm baby. HPs described the birth and follow up of an extremely preterm baby as a journey. The continuity of care and good communication contribute to improving this journey. Due to the complexity of the team involved in the follow up of the extremely preterm baby, there were challenges in communication, at different levels. Relatively small changes in practice, such as allowing for normality by encouraging the parents to read to their baby at night-time, and ensuring adequate communication and appropriate reassurance, could improve the parents’ experience, their engagement with follow up appointments, and therefore their baby’s outcomes. NICE recommends follow up of babies born extremely preterm to school age, however there is no established referral pathway into the paediatric services. Parents value continuity of care, which may be challenging if there is no clear transition process between neonates and paediatrics. Ensuring a smooth transition at every level by designing a clear pathway for the neonatal follow up of extremely preterm babies and the transition to paediatric services may improve the follow up process, parents’ engagement with the system and their baby’s outcomes.