‘A different kind of normal’: parents’ experiences of early care and education for young children born prematurely

Abstract

The number of preterm births is increasing globally and in England, yet professional knowledge about the short and long-term developmental consequences and the psycho-social effect on parents is limited amongst the early years workforce. Using a social ecological systems theory approach this paper reports on a mixed-methods study that aimed to explore parents' experiences of early care and education for young children born prematurely.Findings suggest that having a baby born prematurely has the potential to have a detrimental effect on parent-child bonding and can lead to post-traumatic stress disorder for parents. 2Parents identified a need for professional training for early years practitioners and teachers to help them understand the concept of 'corrected age' and the extra support that children born prematurely (and their parents) might need in attending parent and toddler groups, early years settings and on transition to school especially if there are also multiple births.Preterm birth is also sometimes defined in terms of birth weight:  Low birthweight -Born weighing less than 2500g (5lbs)  Very low birthweight -Born weighing less than 1500g (3lbs)  Extremely low birthweight -Born weighing less than 1000g (2lbs) Reaching developmental milestones may take longer for premature babies compared to babies born at full term because they are in fact younger and not always assessed according to their corrected age.

“We Weren't Prepared for This”

“…In relation to parents' experiences of premature birth, parents in this study reported feeling unprepared for the eventuality of premature birth and that both this and the paucity of information provided to them in hospital had the potential to affect parents' emotional state and their relationship with their infant. Preparing all parents for the possibility of premature birth might help to reduce some of the stress and prolonged psychological distress created by an unknown reality that parents felt ill-prepared for as noted by previous research (Blackburn and Harvey, 2018;Meck et al, 1995;Carson et al, 2015;Treyvaid et al, 2014). In addition, some parents reported their hospital experience in negative terms contributing to the overall traumatic experience of having a child born prematurely.…”

“…The survey questions were piloted with three parents prior to launch. This paper reports only on the early postnatal and community support and intervention data as the early care and education data has been reported elsewhere (Blackburn and Harvey, 2018). The link to the survey was placed on the University website and the survey was promoted widely through existing links and social media.…”

“…Professional knowledge about expected developmental milestones and the emotional impact of premature birth on parents has been found to be important, yet in need of improvement (Blackburn & Harvey, 2018;Foster-Cohen, 2017). These issues are acknowledged by the National Institute for Health and Care Excellence (NICE) Quality Standard (2018) for developmental follow-up of children and young people born preterm.…”

“…Qualitative studies have explored mother-child interactions following premature birth (Nicolau, Rosewell, Marlow & Glazebrook, 2009). More recently mixed-methods research has identified the professional knowledge that parents would like early childhood professionals to hold about premature birth (Blackburn and Harvey, 2018).…”

Teachers' knowledge and approaches to supporting preterm children in the classroom

“…Similarly, Blackburn and Harvey (2020) recently found that British parents of preterm children feel that early years practitioners (i.e., educators of children from birth to 5 years) lack understanding and awareness of their children's specific needs and consequently do not individually adapt their teaching strategies. Accordingly, researchers suggest that teachers should receive training about the potential needs of preterm children and how best to communicate with their parents [37,38].…”