Preterm birth during the COVID-19 pandemic: Parental experience

The pandemic arising from the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) known as COVID-19 has had wide reaching primary and secondary health implications.1 At the end of March 2020, in order to slow the rate of infection, the United Kingdom (UK) government implemented a strict lockdown including; the closure of schools, workplaces and restrictions on outdoor movements other than for exercise or essential shopping, which lasted until early June 2020. During this period, the National Health Service (NHS) experienced cessation of many services, whilst others imposed changes to reduce visitors and footfall on hospital sites. This included stringent and restrictive measures as to how women gave birth in addition to how Neonatal Services operated. In April 2020, the British Society of Perinatal Medicine published extensive guidance on reducing the transmission and spread of COVID-19 amongst families and their newborns.2 As a result, all non-essential maternity care stopped, with in-person appointments changed to telephone or video consultations. Strict social distancing measures were implemented by units around the country by limiting partners of women to attend births (with many women giving birth alone except from the care of healthcare professionals), as well as reducing parental access to infants, particularly those born preterm or unwell, with only one parent at a time allowed by the cot side and no additional visits from the immediate or extended family. The aim of this study was to explore the experiences, information and support needs and decision making of parents with a preterm or unwell neonate during the COVID-19 pandemic. An online survey was developed as part of a larger study investigating the experiences of children and young adults with serious health conditions and their parents.3 The survey opened after the end of the first UK national lockdown (01/07/2020-01/09/2020) a URL link to the survey was distributed, using snowball sampling, through the national charity, Baby Life Support System (Bliss) and the Neonatal Unit, Princess Anne Hospital, Southampton via through their social media. The survey was also open to all parents who were able to access it via a URL link. The study was approved by the University of Southampton and NHS Health Research Authority Research Ethics Committees (Ethics Number IRAS nr. 282176). The survey contained four sections with an open text box on Experiences, Information, Decision Making and Support needs. Each section started with a free text box for comments, with simple introductory questions: Experiences ‘Can you tell us about your experiences and views on the virus in relation to your baby/babies?’; Information: ‘Can you tell us where you get information on the virus and what other information you might need?’; Decisions: ‘Can you tell us how you make decisions about looking after your baby/babies in relation to the virus?’, Support: ‘What additional support would you like, at home or in hospital, in relation to the virus?’. One hundred and seven participants completed the survey. 103 (96%) were mothers and four (4%) were fathers. The median (IQR) parental age was 29.5 years (28–34) with 50% of preterm infants born before 33 weeks gestation. Thematic content analysis was conducted on the free text data and was informed by a three-stage coding process.4 In stage 1, an initial sample of 226 comments was open coded into broad comment categories by two researchers (NC and LM) and used to develop a framework. Disagreements over coding placement were resolved by a third researcher (ASD). For stage 2, this best-fit framework was used to refine the dataset further and finally, during stage 3, overarching themes were developed. As there was considerable overlap in the rich data within the sections, the total number of comments did not match the number of participants. A total of 226 comments were coded. Experiences (n = 58 comments), Information (n = 58 comments), Decisions (n = 48 comments), Support (n = 39 comments), Other (n = 23 comments). Thematic content analysis identified three overarching themes: (1) Virus: with a sub-theme of risk of infection; (2) Impact of restrictions: with a sub-theme of (i) loneliness, (ii) missed experiences and (iii) psychological impact on maternal bonding, (3) Information and support needs: with a sub-theme of (i) information on preterm infants vulnerability and (ii) mental health and well-being (Table S1 summarises these themes and sub-themes, together with illustrative comments for each one). Many parents felt there was a significant psychological and emotional impact due to COVID-19 restrictions on the birthing experience and afterwards and on their neonatal intensive care journey. Findings from the SHARE studies exploring the views of parents of children with cancer, and parents of children with congenital heart disease found that parents were worried about the virus in the context of their child's disease condition.3 This is a similar finding to parents views in the preterm population. However, parents within the preterm survey reported additional concerns about their face being covered by a mask, and the subsequent ability to bond with their baby. Parents were also concerned about their baby being unable to distinguish their voice, smell and touch from that of a healthcare worker caring for their baby. There are a number of limitations of this work including the small sample size, low number of fathers participating and those with limited access to the digital survey. Although participants were recruited through charities and support groups of preterm infants, some groups might have been overlooked such as those whose first language is not English or those who do not seek information from Bliss, thus imposing sample bias. Despite these limitations, we believe the qualitative findings of this survey are important particularly with regard to findings ways to address the trauma felt by mothers giving birth alone as well as the psychological impact of missed experiences for partners. It has been reported that parental stress (especially following a NICU admission) is associated with poorer development outcomes in preterm infants.5 The cessation or reduction of visitation rights in many NICUs as part of COVID-19-related restrictions are postulated as increasing parental stress associated with an admission. Whilst there is no empirical studies at present, future work will undoubtedly consider the impact of these restrictions on preterm development.5 Future work should consider innovative ways to include fathers and the extended family in preterm infant's journey from birth to home, as well as considering the use of clear visor style face coverings that will allow infants to see their parent's full face. We would like to thank Bliss Charity for supporting the study and to the parents who completed the survey and shared their experiences and views. There is no funding associated with this work, and the authors have no conflicts of interest. Please note: The publisher is not responsible for the content or functionality of any supporting information supplied by the authors. Any queries (other than missing content) should be directed to the corresponding author for the article.