Parents of newborn babies not aware of consequences of screening
A team of University of Manchester researchers have found that changes are urgently needed in how parents are informed about newborn bloodspot screening to ensure they understand it and its consequences for them and their baby.
The research, which will be launched on 2 October at The University, suggests changes could be made which would not only ensure parents are better informed, but which could be more cost-effective than current practice.
Newborn screening is seen as one of the top public health advances of the developed world.
The research was funded by the National Institute for Health Research.
A blood sample taken soon after birth enables nine serious conditions such as cystic fibrosis and sickle cell to be diagnosed within the first weeks of life, meaning that treatment and care can start immediately.
However, the information that has to be presented before screening is complex – relating to the nine rare but very serious conditions.
Screening can identify carriers of these genetic conditions which has implications for siblings and wider family members. Research shows families value the screening results if they are well informed before screening. Without this, results can cause a lot of distress to families.
Professor Dame Tina Lavender, who was on the research team, said: “Currently, parents are given a lengthy booklet covering all screening early in pregnancy and midwives most commonly spend less than five minutes discussing newborn screening with parents after birth.
“Neither parents nor midwives in this study felt this was effective.”
Currently, parents are given a lengthy booklet covering all screening early in pregnancy and midwives most commonly spend less than five minutes discussing newborn screening with parents after birth. Neither parents nor midwives in this study felt this was effective
Dr Fiona Ulph, who led the research team, said: “This research and other international studies have found that this leaves parents unprepared for their child’s diagnosis.
“Parents are distressed when they find out key information after screening has been conducted – such as that their baby’s blood sample is retained for future research purposes.”
Importantly, both parents and midwives in the research agreed on how to change practice to improve awareness. The key changes the researchers say are needed are:
- When information is given: Ensuring parents are given information about screening for their baby in the third trimester, so they can think about it and ask questions before the birth;
- How we give information about screening: Using more innovative materials to inform parents than just one lengthy booklet, such as via group appointments, via clinic waiting room TVs. Importantly using one method for all is not effective.
- The content of screening information: Although midwives and parents agreed on what information parents needed to know, the current order of the messages leads to the information being seen as not personally relevant. Primarily, parents need to know they have a choice about screening, it is not routine.
The team of researchers included Dr Fiona Ulph (Project leader), Dame Tina Lavender (Prof midwifery), Prof Katherine Payne (health economics), Prof Rebecca Bennett (Bioethics), Prof Kieran Walshe (Prof Health Policy), Dr Stephen Roberts (statistician), Dr Nimrata Dharni (health psychology), Mr Stuart Wright (Health economics).