Parents experiences of early care and education for children born prematurely.

Born early: early care and education for young children born prematurely

Each year in England, around 10,000 children are born very preterm (at less than 32 weeks gestation) and a further 60,000 are born moderately preterm (at 32-36 weeks gestation). The number of preterm births has increased in the last two decades, and more preterm children are surviving due to improved neonatal care (National Neonatal Audit Programmed, 2015). However, the prevalence of cognitive, behavioural and emotional problems in preterm populations has not changed. In particular, children born preterm have been found to experience specific learning problems including difficulties with mathematics, visual-spatial skills, memory and attention. Studies have explored parents’ experiences of having a child born prematurely. However, these studies have generally focused on the months immediately following the birth and have taken a health and social care perspective (Harvey el al, 2013; Garfield et al, 2014; Gray et al, 2013). Quantitative studies have also examined the development of children who were born prematurely and have identified the learning difficulties that they face during early childhood (Marlow, 2004; Johnson et al, 2010; Costeloe 2012). Parents’ experience of early years education is an under-researched area.

The benefits of early care and education early intervention (EI) have been well documented in policy and research in terms of improving outcomes for children at risk of or identified with SEN. Whilst not all children born prematurely will be identified with Special Educational Needs, ongoing monitoring of their learning and development has the potential to ameliorate any future delays or difficulties. This study aimed to explore the early care and education experiences of children born prematurely through reports from parents.  Methods included an online survey and interviews with sample of survey respondents.

Parents were interested in telling their story as evidenced by the high number of responses to the survey (209).

From the survey, in terms of hospital experiences, over half of all parents were given sufficient information on practical aspects of caring for a prematurely born infant such as feeding. However, nearly half of all parents were provided with insufficient information about the long-term implications of premature birth in relation to their child’s development. From interviews only three parents had received enough information about their child’s long term development. For all three parents, their child had been at risk of death. Nearly a third of parents from the survey described their hospital experience as positive overall whilst a similar number described their hospital experience in negative terms. Parents from the survey and interviews would also have liked more information about support for themselves and their baby on discharge from hospital. From interviews two parents would have liked to have known about the risk and potential implications of premature birth during their pregnancy.

High numbers of parents responding to the survey were not able to hold or touch their baby immediately following birth and for many parents this had not happened until a week has passed. This was a source of distress for parents and some parents talked about the detrimental effect this had on their relationship with their infant.

In terms of coming home from hospital, ten parents from interviews described their experiences of ‘a different kind of normal’. This related largely to their emotional experiences of parenting. Five of them talked about PTSD. Only eight parents had support from family members.

Half of all survey parents had attended parent and toddler groups and the various types they attended. However, many parents did not attend these groups due to health concerns (for them or their child), perceived lack of understanding from other parents about premature birth, the unsuitability of the groups for children born prematurely and/or multiple births or lack of access to such groups in the area. Non-attendance at these groups sometimes had the effect of isolating parents. A small number of parents had found specialist groups near to them which they found useful. Nine parents from interviews had attended parent and toddler groups and the others hadn’t for similar reasons to the survey parents.

In terms of early help and support from professionals, few parents responding to the survey had been provided with support. Some parents talked about the difficulty they had experienced in obtaining support from professionals for their child on discharge and in particular they mentioned that their health visitor had insufficient information about premature birth. The majority of parents (9) from interviews shared negative experiences of health visitors whilst the remaining four shared positive experiences.

From the survey one third of the children reported on were attending pre-school education and the majority of parents were able to send their child the pre-school of their choice. Most parents informed pre-school staff that their child was born prematurely but only half of parents who had informed staff said that the pre-school had subsequently asked about any developmental delays/difficulties resulting from this. Nearly half of the parents said that the pre-school had adapted their strategies to support their child, whilst the other half had not. A small percentage of parents said the setting had not adapted their strategies even though this would have benefitted their child. From interviews parents stressed the importance of communication with pre-school staff and the importance of early years staff understanding the impact of premature birth on children’s development.

All parents would like pre-school staff to receive training about premature birth and some parents would also like them to receive training about multiple births. A small number of survey parents were given information about delaying school entry whilst nearly one third would have like more information about this.

In terms of starting school, from the survey the majority of parents informed school staff that their child was born prematurely, but only a third of school staff adapted the environment or teaching strategies to support their child whilst nearly two thirds felt that their child needed extra help at school. From interviews parents reported mixed experiences of teachers understanding of premature birth and their ability and willingness to adapt the environment and teaching strategies.

Overall this research contributes to other research in demonstrating the areas in which parents of children born prematurely would like more support. One pressing area in terms of parent – child relationships is the concern that parents are left emotionally distressed and this appears to need closer monitoring from the point of discharge from hospital to ensure positive relationships and mental well-being for children and parents.

Read the project report here