Page 174 - 16Neonatal Jaundice_compressed

Information

14.5 weeks postpartum. Regarding causes of jaundice, 26 mothers (55%) believed that the
quality and quantity of breastfeeding was pertinent to this. The next most commonly raised
theme was uncertainty, with most mothers saying they had not been given an explanation of
jaundice. These mothers were exclusively Spanish-speaking, young, non-high-school graduates
whose babies had undergone blood testing because of jaundice.
Guilt was a theme in 18 (38%) of the interviews, with quotes such as ‘got it from me’, ‘not a
good mother’ and ‘doing something wrong’ recorded. Some mothers believed that babies were
born with jaundice or that it was a normal part of giving birth, attributing it to labour or bruising
during delivery, or adjustment to a new environment. The mothers indicated that blood
sampling was distressing both for them and their babies.
In all, 27 mothers (57%) perceived neonatal jaundice to be a serious condition and outlined the
following important issues as causing them concern:
• lack of preparedness for seeing their baby become yellow
• lack of knowledge about, and understanding of, jaundice
• severity of the clinical course
• concerns about possible effects of jaundice on their baby
• prolonged jaundice.

Of the 20 mothers who were not concerned, ten reported that their baby appeared healthy and
was feeding well despite being jaundiced. These mothers expressed confusion about the need
to seek medical advice for jaundice if the baby appeared healthy. Of these 20 mothers, five of
their babies had breast milk jaundice and five had had blood tests but did not require treatment.
The remaining ten women had no concerns because they had received prompt information and
reassurance about jaundice. Again their babies had needed only minimal intervention.
Maternal anxiety increased in proportion to the severity of hyperbilirubinaemia. Many mothers
had been told that high bilirubin levels can cause brain damage, but only some had been given
the specific advice about such levels, so others were uncertain, and worried about the risks facing
their own babies. For the 23 babies who underwent phototherapy, mothers recalled hearing and
seeing their babies crying, and their own distress at being unable to comfort them at the time.

Most women expressed a preference for being informed about jaundice prenatally, while others
wanted information at discharge or only in the event of their baby becoming jaundiced.
Preferred formats for communicating information included individual verbal communication,
small group discussions, written pamphlets and videos. Mothers requested more detailed
information regarding causes of jaundice, information that addressed maternal responsibilities,
management procedures, potential effects of jaundice and its treatment, anticipated duration of
jaundice, and measures that they could take themselves to prevent jaundice and to care for
jaundiced babies.

Support from mothers who had previously experienced neonatal jaundice was especially
welcome: their shared experiences reassured mothers and improved their understanding of
jaundice. [EL III]

Evidence summary

The focus-group studies from the USA, both EL III, illustrate the need for provision of more
information to parents of newborn babies about jaundice. Mothers expressed a preference for
prenatal information and for further information and support to be given at diagnosis and during
treatment. Maternal anxiety increased in proportion to the severity of jaundice, but prompt
information and reassurance can help to allay this.
GDG translation from evidence
There is little published evidence concerning the effectiveness of, and satisfaction with,
provision of parental information in the management of jaundice. Qualitative research
highlights areas of both good and bad practice. In one small study, mothers who received timely
information reported less concern than mothers who were not kept informed of their baby’s
progress. The same study found that most women expressed a preference for being informed
about jaundice prenatally. More detailed information is needed regarding causes of jaundice,

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