DECISION MAKING IN EXPANDED NEWBORN SCREENING; A QUALITATIVE STUDY EXAMINING CONSENT AND COMMUNICATION PREFERENCES OF PARENTS IN THE UK

Purpose:

Newborn Screening (NBS) in the UK follows an informed consent model. However, research suggests that NBS information provision may not be effective for all parents. Expansion of NBS may further exacerbate this problem. This study explored parents’ views on alternative consent and communication models for expanded NBS. 

Method:

Semi-structured interviews were conducted with 41 participants (33 women and 8 men). Participants were recruited from across the NBS pathway from first antenatal appointment (n=14), awaiting the screening result (n=4), recipients of a normal NBS result (n=15) and recipients of a diagnosis (n=8). All parents had a child who had been screened in the last two years. To facilitate discussion, participants were presented with a framework of alternate consent and communication models for expanded NBS prior to interviews. Data were analysed inductively using thematic analysis.

Result:

Most parents did not feel they had made an informed decision for NBS with many being unaware a choice could be made. Written information received in early pregnancy was rarely recalled at the time of screening due to the time lag in receiving the information and screening taking place. Lack of prior awareness of screening resulted in distressing emotional consequences for parents whose child had received a diagnosis following NBS. Although dissatisfied with their experience, most participants were supportive of the assumed consent model on the proviso that they were adequately informed beforehand. Preferences on the content of communication varied. Parents wanted NBS information to be given in the third trimester, at a time when it would be relevant and feasible for them to consider. All participants emphasised the need for NBS information to be provided in more accessible, concise and multiple formats with the flexibility to choose the information format relevant for them. Written information alone was challenging for parents with who struggled with literacy and for those whose first language was not English. 

Conclusion:

Our findings indicate a ‘one size fits all approach’ may not be sufficient for optimising informed decision making within expanded NBS. With the potential of screening and the complexity of information to be conveyed to expand further, relevant and accessible communication strategies are required to meet the needs of an increasingly diverse population of parents to ensure NBS remains an equitable service for all.