Abstract
BACKGROUND:
This review provides an update of the current research related to the impact of extreme and very premature birth on parental mental health and family functioning following discharge from hospital.
METHODS:
Full-text peer reviewed articles in English, describing parents’ and families’ health and wellbeing after the discharge from hospital of their baby using validated questionnaires, were evaluated. Results of included studies are presented in a summarized format. Embase, Medline and PsycINFO databases were accessed in January 2021.
RESULTS:
38 studies were included. Nine manuscripts reported on parental mental health and 13 on stress, which are a concern after the birth of a premature infant, especially in the first year. Depression, anxiety, and stress are known to measure higher compared to parents of infants born at term. Over several years, these measures of mental health decrease significantly. Four reported on quality of life for parents of premature infants, which is reduced immediately after discharge, but then improves over time. The impact of premature birth on the family functioning was described in ten included studies and was described to have positive and negative consequences.
CONCLUSION:
The negative impact of the premature birth and hospital journey on parental mental health lessens significantly with time.
Introduction
Having a critically ill child is one of the most confronting events in parents’ lives. An estimated 9.5 per 1000 babies are born very or extremely prematurely in high-income countries [1]. The WHO classifies extremely preterm birth as being born at less than 28 weeks gestation and very preterm birth as being born between 28 and 32 weeks gestation [2]. Both extremely preterm and very preterm babies spend months in neonatal intensive care units (NICU), and some are discharged with the anticipation of life changing physical and neurodevelopmental disabilities.
A supportive family environment and nurturing parental relationships can favourably influence a child’s development and offset the disadvantages they may face after being born early [3]. Impaired parental mental health and family dysfunction are important risk factors for altered social and relationship development in the child [4, 5]. Therefore, many researchers and parent groups have advocated for early identification of parents in distress who might benefit from interventions focused on improving their health and wellbeing, increasing their resilience and enhancing their capability to nurture and support their child [6]. Historically, most of the research in this field focuses on the impact premature birth has on family and parental stress in the immediate postpartum period, as well as on maternal post-traumatic stress disorder following premature birth [7, 8]. Pleasingly, more recent research has focused on in hospital initiatives to identify parents at risk of adverse mental health outcomes and to offer assistance [9]. However, once discharged from hospital, much of the support provided from medical staff, peer support and social work recedes. Recently, there has been an upswing in interest in examining the mental health effects of preterm delivery on the parents and the family. Studies have emerged evaluating parental mental health shortly after birth and the trajectories of different psychological conditions over time.
This review will summarize the most recent developments in exploring the psychosocial impact of preterm delivery upon families after discharge and considering the scope for further research.
Methods
Search strategy
Publications had to meet the following inclusion criteria: full-text articles that described parents’ and families’ health and wellbeing measured with validated questionnaires after the discharge from NICU for their extremely or very premature infant. Studies had to be written in English; published in the years of 2000– 2020 inclusive and be peer reviewed. The reviewers excluded studies of personal narratives or qualitative interviews, studies of family integrated care practices within the NICU that did not report on longer term mental health outcomes and studies regarding antenatal decision making at the edge of viability, studies involving end-of-life experiences and decision making (Fig. 1) and systematic literature reviews. Additionally, papers were excluded if they only reported on in-hospital parental and family health outcomes. Included studies were grouped into four categories depending on what their main examined outcomes were: Parental mental health, parental stress, quality of life and family functioning.
Inclusion flowchart.
Embase, Medline and PsycINFO databases were searched. The search was conducted by the authors and a health librarian in January 2021. The search terms included: Extreme prematurity, extremely low birthweight OR very premature, very low birthweight AND, parent, OR father OR mother, family, posttraumatic stress AND/OR disorder, postnatal OR postpartum depression, OR perinatal depression, anxiety, mental, stress, depression, illness, health, sick, psychological, disease.
Titles and their abstract, after removing duplicates, were reviewed using ENDNOTE software. Full-text articles of relevant records were carefully reviewed by the authors according to the inclusion and exclusion criteria. Additionally, reference lists of all included publications were scrutinised to ensure all relevant papers are included.
We identified 961 records through database searching, 532 remained after removal of duplicates, and 440 were excluded deemed out of scope by the reviewers. 92 full text articles were assessed for eligibility resulting in the exclusion of 61 articles. 31 manuscripts were included in the review. After reviewing reference lists of the included articles, a further seven articles were included, leading to the 38 final studies included in this review. Figure 1 illustrates the inclusion and exclusion process.
Out of the 38 included articles nine reported on parental mental health. Six of these articles described the parental mental health within the first year after discharge, three studies go beyond the first year.
13 studies examined parental stress, with three reporting on stress within the first year at one time point and ten reporting trajectories. Four articles reported on the quality of life of parents after discharge, two explored quality of life within the first 18 months after discharge, two studies examined quality of life decades after discharge. There were ten studies focussing on family functioning. Two articles reported on family function 12 to 24 months after discharge, eight examined families many years or decades after taking home their extremely preterm infant.
The following paragraphs summarize the outcomes of the included articles.
Parental mental health after discharge
The included studies showed clear results, that parental mental health is a concern after the birth of a premature infant, especially in the first year with depression and anxiety measuring higher compared to parents of term born infants. Consecutive measurements of Edinburgh postnatal depression scores (EPDS) over time, show the highest results after birth with ongoing higher values for parents of premature infants by three months of age [10–12]. As time progresses, the differences between EDPS results in parents of preterm infants compared to parents of term infants becomes less evident [13, 14]. There is a significant decrease of the incidence of mental health conditions most notably during the first year, but with continued improvement over the following years [15]. Research on long term mental health outcomes show no difference between term and preterm parents 20 years after the discharge [16].
Risk factors for adverse mental health outcomes in parents of premature infants were identified as a history of depression, poor infant attachment, poor social support, as well as previous psychological treatment, trait anxiety and maternal age [15, 17]. A comparison of bereaved parents and parents of surviving preterm infants found a similar incidence of depression three to four years after discharge [18].
Parental stress in the first year and trajectories thereafter
Literature on parental stress describes a significant difference between the stress experienced in the first postpartum year and the years thereafter. Most of the studies included examining stress after discharge and the trajectory of the level of distress over time found increased levels in the first-year post discharge when comparing parents of preterm infants to parents of term infants [19, 20]. Some studies described continued high levels of stress and persisting symptoms of post-traumatic stress disorder (PTSD) for months to years after discharge [21, 22]. Whereas other studies have found no difference between the stress levels of new parents regardless of premature or term birth [23, 24].
Almost all studies observed a decrease in parental stress over time. A few studies described stress levels that returned to population average [25], whereas most found elevated levels of stress persisted above term controls by 3– 5 years post discharge [26–28].
Multiple risk factors have been identified for parents to experience higher levels of stress. Low education in mothers, disadvantaged background and severe health issues in their babies led to the highest amount of distress at various time points after discharge, as did multiple births [29]. Parents who experienced extreme levels of distress whilst in the NICU, demonstrated higher levels of distress at 2 years post-discharge [30, 31].
Many studies that examine parental mental health make the observation that elevated parental stress is one of the factors affecting mental health negatively.
Parental quality of life
Longitudinal studies on parental quality of life (QOL) after the birth of a preterm infant found comparable or better QOL in parents of preterm infants compared to parents of term infants in the years after birth [32]. Interestingly, the QOL of the parents was not influenced by their child’s level of disability, health needs or academic achievement, but by their offspring’s overall mental health, happiness, and ability to sustain peer relationships [33]. Physical health related quality of life has been described as most affected in parents of a preterm infant [34]. An American group of researchers examined the trajectory of QOL from inpatient to 3 months post-discharge and found that parents of preterm infants experienced the most significantly reduced QOL whilst in hospital, but the largest improvement after discharge. Comparatively, parents of term infants showed no improvement in QOL after discharge [35].
Impact on family and family functioning
Studies into family functioning and relationship quality (i.e. divorce rate, marital satisfaction) found no difference in outcome between preterm and term infants [16, 36, 37]. Some even showed positive impacts on the family of preterm born children – advocating that the experience had brought the family closer together [38], reduced conflict and led to more organization and control [39].
Many studies examined family care burden and showed higher burden especially if their child required ongoing care for chronic conditions, had neurodevelopmental disability or if the family was more socioeconomically vulnerable [40–42]. One study stated “that adverse family outcomes were mediated by ongoing problems in child functioning” at school age [43]. Other research has shown that the care burden decreases over time but that burden remains higher than in the term born control group [44].
Table one describes all included articles in detail.
Included articles
Included articles
Abbreviations: ELBW: extremely low birthweight, VLBW: very low birthweight, QOL: quality of life, NICU: neonatal intensive care unit, PTSD: posttraumatic stress disorder, IVH: intraventricular haemorrhage, PND: postnatal depression, VPT: very preterm.
The aim of this review was to summarise the current evidence available to describe the impact that premature delivery has on parents’ and families’ mental health and wellbeing after discharge.
The overarching theme was clearly that parental mental health, stress, quality of life and family functioning were adversely affected during the first three to five years post NICU discharge. Over time however, there was a significant improvement in this, with some levels being comparable to or even better than in families of term infants. Risk factors for ongoing struggles were identified as lower socioeconomic status, lower maternal education, and higher medical acuity in the child. Additionally, there was a subset of mothers identified with extremely high stress levels whilst their infant was in the NICU, who do not seem to cope as well as other parents following discharge home. Their levels of stress remained consistently high throughout their infant’s childhood [30]. This finding could represent mothers whose child was very unwell in the NICU and progressed to have demanding special needs, a maternal personality type with low resilience, or a family that struggled through the NICU journey without peer support. All of these factors could contribute further to the risk of impaired coping after discharge and represent a group for whom additional support after discharge should be considered [27, 30, 31].
Early intervention for parents, especially those who are identified as vulnerable, clearly has an important role to play in improving family functioning and thereby optimising neurodevelopmental outcomes. Despite studies and reviews which have come to the same conclusion in the past [41] one could argue that the focus has not shifted enough to optimising the psychosocial supports available for vulnerable parents in the NICU and beyond within the last decade.
On the other hand, this review provides some cause for optimism. It highlights the positive impact the birth of a premature infant can have on families. The resilience and strength of a premature infant and their families is an inspiration to many.
We spend millions of dollars and countless hours on improving in-hospital outcomes of our vulnerable preterm patients, trying to find new ways to avoid damage to their immature organs and to decrease the negative impact premature birth has on the child’s future development. However, we seem to underestimate the impact that an anxious or depressed parent can have on optimising the child’s neurodevelopmental potential. As requested by parent advocates, more emphasis should be put on the mental health of parents, and strategies need to be explored to identify parents at risk and support them through the NICU journey and beyond [45].
Conclusion
Parenting a premature infant is stressful and has a long-lasting impact on the parents and the broader family. Reassuringly, the negative impact of the premature birth and the NICU journey lessens significantly with time.
Footnotes
Acknowledgments
The authors would like to thank Dr Rebecca Barzegar for her assistance in proofreading this review. Furthermore, we wish to express gratitude to the staff at the library at Liverpool Hospital for their help with the review process.
Disclosure statement
This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors. There is no conflict of interest to disclose. And this article has not been presented in part or in toto in other journals or publications and has not been submitted for publication elsewhere.