Research and commentary

Waiting on a newborn’s result from a heel prick test is an anxious time for parents

Healthcare professionals’ and parents’ experiences of the confirmatory testing period

In 2015, the UK National Screening Committee adopted screening for four of the five additional conditions in the newborn bloodspot screening programme, which means more rare diseases can be found, but what does this mean for families?

Moody L, Atkinson L, Kehal I et al (2017) Healthcare professionals’ and parents’ experiences of the confirmatory testing period: a qualitative study of the UK expanded newborn screening pilot. BMC Pediatrics. 17, 1, 121.

NBS
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Aim

The aim of this paper was to determine healthcare professionals’ (HCPs) and parents’ views on, and experiences of, communication and interaction while waiting for confirmation of positive expanded newborn screening (NBS) programme results.

Method

Semi-structured interviews were undertaken with the parents of children who had received positive expanded NBS results, and with HCPs who had been involved in the diagnosis and support of these parents, during the pilot period July 2012-July 2013.

Eleven interviews were conducted with ten parents, with the mother and father being present during two, and with six physicians in metabolic medicine, two nurses and three dietitians.

Findings

Eight participants’ children had true positive screens and two were identified as false positive.

Five themes emerged from the interview data that suggest elements on the path through confirmatory testing that parents find difficult, and these could be developed to improve their experience. Themes include how results are communicated to parents, a more rapid turnaround of results, a more consistent approach and interventions to support the family.

Conclusion

Expanding NBS will inevitably lead to increase in the number of rare conditions identified – true positives – but also of the number of false positive cases. There is therefore a need to consider and mediate potentially negative effects on families.

The findings from this study point to elements on the path through confirmatory testing that parents find difficult and that need to be addressed to improve their experiences of receiving results.

The right support for parents can reduce the distress felt after a positive test

Research indicates that a positive test can have an impact on family relationships, parental depression and relationships with healthcare professionals (Chudleigh et al 2016). However, the communication and support families receive during the confirmatory testing period are thought to mediate the impact on them (Salm et al 2012).

It is essential that approaches to deliver positive newborn screening (NBS) results are informed by parents and shaped to meet their needs.

It is important for staff to communicate positive NBS results in a manner that minimises distress to families, and does not detrimentally affect parents’ relationships with their child and other family members.

Empirical evidence is lacking on the potential impact of information provision on parental well-being and decision-making strategies.

As budgets for national communication strategies are finite, there is a need to understand the short and long-term costs of different aspects of the NBS programme, including the implications of providing positive NBS results.

 

References

  • Chudleigh J, Buckingham S, Dignan J et al (2016) Parents’ experiences of receiving the initial positive newborn screening (NBS) result for cystic fibrosis and sickle cell disease. Journal of Genetic Counselling. 20, 1-2.
  • Salm A, Yetter E, Tluczek A (2012) Informing parents about positive newborn screening results: parents’ recommendations. Journal of Child Health Care. 16, 4, 367-381.

Jane Chudleigh is programme director and senior lecturer in child health, City University of London. She contributed this article on behalf of the RCN’s Research in Child Health community

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