Exploring parental emotional support needs after NICU discharge

This is optimal for the infant's survival, however, it can be an extremely difficult and overwhelming experience for parents and exposes them to the stressful environment of the NICU. The postpartum period is a time of increased psychological vulnerability for all parents, however, systematic review evidence suggests that parents with a baby admitted to neonatal care are at considerably higher risk of developing symptoms of anxiety, depression or posttraumatic stress than parents of healthy, full-term infants (Malouf et al., 2022; Vigod et al., 2010).

What is the health problem?

During the infant's time in hospital parents are surrounded by medical professionals and monitoring equipment constantly reassuring them about their baby's wellbeing. The transition from hospital to home is the first time parents will have cared for their baby independently, leaving many in a state of constant fear that they may not recognise signs of illness or know how to respond in an emergency. The lack of continuity between hospital and community-based services means community staff do not understand the infant's unique needs and they lack specialist knowledge of how to care for infants with complex medical conditions (Adama et al., 2021). Despite these known challenges, the point of discharge is often thought of as the end of the neonatal journey and little research has been carried out on the long-term implications of a neonatal stay on parental mental health.

Why this research is important?

Research suggests high levels of parental psychological distress may persist for many months if not years after discharge (Malouf et al., 2022) Further research is therefore necessary in order to understand how psychological distress manifests in the time after discharge and what factors are associated with parental well-being and distress, as well as resilience. It is also important to develop a better understanding of how existing services are meeting the need of this population and what improvements can be made to both hospital and community- based services in order to better support parents throughout their neonatal journey.

What is the aim of the project?

Primary objective:

1. To quantitatively evaluate change in perinatal mental health outcomes among parents with babies in NICU across three time-points, from 2-4 weeks post-discharge, 4-6 months post-discharge, 10-12 months post-discharge.

Secondary objectives:

1. To quantitatively investigate the association between parent and infant characteristics and parental clinical outcomes, in order to determine risk and protective factors. 
2. To evaluate the association between parental psychological distress and disturbances in parent-infant bonding. 
3. To summarise physical and mental health service use at all three time-points of data collection.
4. To qualitatively explore parents’ subjective experience of distress, service use and support needs, in the year following discharge from the NICU.

How this research will be carried out

This observational study will follow a prospective longitudinal cohort design, following participants across three time-points: Time 1: 2-4 weeks post-discharge to home, Time 2: 4-6 months post-discharge to home, Time 3: 10-12 months post-discharge to home.

Participants will be recruited via a study poster, displayed across three NHS Neonatal Intensive Care Units (NICUs) and across third sector organisations social media platforms. Participants will answer self-report screening questions to determine whether they are eligible to take part and informed consent will be obtained electronically.

Semi-structured interviews will be conducted with an estimated 20 parents, approximately 10 mothers and 10 fathers. Should the sample size at time-point 3 allow it, a purposive sample of parents, selected on the basis of parent and infant characteristics will be invited to the interview. Interviews will explore parents’ experiences of the psychological impact of having a baby admitted to neonatal intensive care, including perceived challenges and coping mechanisms. The interview will also ask parents about service use, including what they have found helpful or unhelpful at the various stages of their neonatal journey, and what factors influence their decision to access support. Finally, the interview will address parents support needs, including how existing services could be improved and what additional services would be beneficial.

How patients and the public are involved in the study

Patient and public involvement and engagement (PPIE) has been implemented throughout various stages of the projects development.

Design of the research: A first draft of the study recruitment and the time-point 1 questionnaires were sent to a group of experts by experience (ExE), recruited from the Evelina London Children’s Hospital ENSPIRE programme. The ENSPIRE programme are a group of veteran parents who have volunteered to be part of the Evelina London neonatal unit’s parent and staff engagement workstream. These parents advise and work collaboratively with the neonatal team on a range of projects. The ExE group were asked to provide feedback on the suitability/ sensitivity of the content, how easily questions could be answered and the appropriateness of the length of the questionnaires.

The ExE group have also been asked to provide feedback on how we can ensure the research targets a diverse sample of parents and addresses inequalities in research. Alterations were made following this feedback, ensuring that the study materials are both sensitive and appropriate for use amongst this parent population. Once the semi-structured interview topic guide has been drafted, this will also be presented to the ENSPIRE programme for feedback on the same aspects of design.  Service user led charities will share the recruitment poster across their social media platforms.

Analysis of results: The lead researcher will first analyse the quantitative results and conduct a thematic analysis on the qualitative data. A summary of the initial findings will then be presented to members of the ENSPIRE programme to elicit feedback and to determine how to prioritise the themes identified so that they are a true representation of a service user perspective.

Dissemination of research findings: Service user led charities will disseminate the findings, by sharing a report of the study findings on their social media platforms or web pages. The lead researcher has had regular contact with these charities as they were involved in the advertising and recruitment of participants for the previous phase of this research.   

Potential benefits of the study

Understanding factors associated with parental risk and resilience will enable us to identify families at greater risk of psychological distress and therefore in need of more support, during the early stages of a neonatal admission. Better knowledge of parental need will enable the development of a more tailored programme of support which will give families the emotional support and skills teaching that they feel they need to be able to confidently care for their infant after discharge. Effective intervention may reduce parental psychological distress thereby improving maternal and/or paternal quality of life.

High levels of parental anxiety during a baby’s admission to the NICU and around the time of discharge has been associated with an increased number of acute care visits after discharge (Gennaro & Stringer, 1991). Improving parental mental health in the postpartum period may therefore reduce acute care visits after an infant is discharged.

This study was funded by the Economic and Social Research Council (ESRC). It was adopted by ARC South London’s Executive in May 2023 and will be completed by September 2024.