Parents experience lack of support for premature children

Academics from Birmingham City University looked at the experiences of 209 parents whose children were born before the 37^th week of pregnancy, including the level of support they received while in hospital, after being discharged and when their child started nursery and school.

While 70 parents said they felt supported by staff and their hospital stay had been a positive experience, a similar number described the experience in negative terms.

A total of 19 parents felt that health visitors had insufficient knowledge about premature birth and 24 described the early help system upon discharge from hospital as ‘fragmented’.

One parent said, ‘My baby struggled with his development and I was worried. Limited to no support offered. The child development worker was supposed to see us every three months, but due to numbers this was not possible. Health visitors have not been helpful. They have a lack of knowledge and often upset me by giving the wrong information.'

Pre-schools

Of the 68 per cent whose children attended pre-school, the majority of parents volunteered the information that their child was born prematurely, while just 7 per cent of nursery staff asked specifically about pre-term birth.

Close to half of the settings asked parents about any developmental delays/difficulties resulting from premature birth.

Some parents commented on basic aspects of early years provision, such as equipment, that would serve as a physical barrier to their child’s inclusion at a setting.

One parent said, ‘My daughter is due to start nursery in a couple of weeks at 11 months old. However, while her mental and cognitive development is correct for her age, physically she is the size of an average five-month-old. Looking around the nursery we found that the tables/chairs where she would be expected to eat/play are far too high, and some of the toys and equipment will be out of her reach.’

Schools

Parents reported that only 15 per cent of teachers or teaching assistants asked about premature birth on entry to primary school. However, 77 per cent of parents informed teaching staff themselves.

According to parents’ responses, just 34 per cent of teachers and teaching assistants adapted the environment or their teaching strategies to support a child born prematurely. More than 60 per cent of parents said they felt that their child needs additional support and/or resources at school.

One parent said, ‘The total lack of understanding in the local primary school was incredibly traumatic for us as a family and damaged our son's development even further. Educators must be taught what the impact of prematurity can have.’

Lead author Dr Carolyn Blackburn, senior research fellow at the School of Education and Social Work at Birmingham City University, who will present the findings of the study at a conference at the university next month, said, ‘It’s important that professionals in health and education are aware of the socio-emotional impact for parents of having a child born prematurely and about developmental risks for children. They need to be aware, that for mothers, the long-term emotional impact can have a devastating effect on the parent-child relationship as some mother’s experience post-traumatic stress disorder and need psychological support. 

‘Fathers have also mentioned stress and anxiety and may need support to talk about their emotions. Children might need additional support from a wide range of professionals. A long-term assessment and monitoring programme for the whole family should be considered.’