Towards a Social Model of Prematurity: Understanding the Social Impact of Prematurity and the Role of Inclusive Parenting Practices in Neonatal Intensive Care Units

Definition

Prematurity, defined as a birth before 37 weeks of gestation, affects approximately 15 million infants worldwide yearly. Beyond the Neonatal Intensive Care Unit and the possibility of long-term developmental challenges affecting children’s quality of life, prematurity influences family dynamics, including parental mental health, financial stability, employment, and daily life. On a broader scale, research highlights the significant socioeconomic consequences of preterm birth that influence public healthcare policies, healthcare systems, and long-term costs. Addressing these challenges requires a multidisciplinary approach, beginning in the NICUs, with parental inclusion as a key component. The shift toward parental inclusion in the NICU may represent a fundamental transition from a medical to a social model of prematurity. The concept of a social model of prematurity parallels the social model of disability, from disability studies, focusing on premature babies, strengthening their abilities and nurturing early caregiver—infant relationships. It highlights how societal structures, such as accessibility and support systems, shape developmental outcomes and inclusion of premature infants, rather than framing prematurity solely in terms of survival and treatment.

1. Introduction

Every infant delivered before the 37th week of gestational age is considered premature. Each year, approximately 15 million babies are born preterm (1 in 10 newborns). These babies survive thanks to advances in neonatology and perinatal medicine at Neonatal Intensive Care Units [NICUs] [1]. However, prematurity may lead to long-term neuro-developmental and health challenges affecting premature infants’ quality of life [2]. Furthermore, admission of a preterm infant to the NICU can be highly stressful for parents [3]. Consequently, prematurity is considered a significant medical and social issue with profound global implications [4,5]. However, prematurity is more than a medical condition. Premature babies should not be considered incomplete full-term infants. On the contrary, they appear to be well-equipped and adequately adapted “fetuses”. Fetuses, who strive to regain the levels of developmental capacity in the incubator, within the NICU environment [6].

This perspective views preterm infants as competent and capable of communication rather than passive patients. NICUs, though a lifesaving environment, often present sensory and emotional stressors [6,7,8]. Preterm infants demonstrate physiological and behavioral competencies aligned with their gestational age, competently adapted to the unique demands of extra-uterine life. Their autonomic system, while immature, shows functional regulation attempts appropriate to their gestational age. Behavioral responses—such as organized sleep–wake states, motor patterns, and sensory processing—are not deficient; rather, they represent developmental stages. These stages are appropriate for their current neural maturation and reflect their ongoing developmental capacities rather than deficits [9,10]. Premature babies’ brains also exhibit significant neuroplasticity, allowing for adaptive growth when supported by enriched and responsive care environments [11]. Furthermore, their early emotional and social engagement, such as recognizing voices and responding to touch, indicates innate capacities for relational connection [12,13].

Challenging the traditional deficit-based views on prematurity, early foundational work by Brazelton [10], Prechtl [14], and Als [9] laid the foundation for understanding and assessing both term and preterm infants. They emphasize that infants possess organized behavioral systems, capable of self-regulation, interaction, and meaningful responses to their environment through body signs, gestures, and spontaneous movement. Research findings argue that preterm infants are active participants in their own developmental trajectory, with complex and dynamic interactions within it, leading to unexpected nonlinear developmental outcomes [15,16]. Furthermore, assessment tools like the Neonatal Behavioral Assessment Scale [13] have revealed the nuanced competencies of preterm infants, including their ability to engage, respond, and regulate in interaction with caregivers. From a social perspective, recognizing preterm infants as competent individuals with intrinsic value may promote family involvement, reduce stigma, and enhance caregiving quality [17,18]. Collectively, these findings may challenge the view that preterm infants are “deficient” full-term infants. They may reframe prematurity from a narrative of deficit to one of adaptation and potential, urging both clinical and developmental frameworks to support individualized, strength-based care.

2. Social Impact of Prematurity

Premature newborns would have at least another 4 to 16 weeks of intrauterine supportive development. During this period, they would benefit from respiratory, cardiac, digestive, and thermal support, provided by maternal blood flow and placental function. Instead, growth that would have been achieved in utero is now achieved in the incubator, within the NICU environment. Premature infants try to adapt their functioning in this extrauterine environment in ways appropriate to their gestational age [6]. The sudden transition to an environment that does not adequately meet their needs and capabilities triggers modifications in the functioning of their physiological subsystems. Furthermore, the process of adaptation can be costly. It often occurs through energy-intensive and frequently defensive behaviors, which in turn, may alter brain structure and function and lead to neonatal disorganization. Interestingly, these organizational challenges in preterm development either worsen or emerge early [6,19,20]. However, the developing infant’s determination to reach maturity seems to counterbalance these challenges [19].

Preterm birth is also traumatic due to the usually unexpected and unplanned preterm delivery, which may leave a mother feeling like her body has failed [21]. It is also referred to as a “period of crisis”. During this period, parents must cope with several stressors, such as potential medical complications, immediate separation, and difficulties in holding or touching their infant, due to the infant’s hospitalization in the NICU. These factors can exacerbate parental anxiety and affect the mother–infant relationship [5,21,22,23]. Also, parental trauma may often lead to overprotective parenting, hindering the independence of their children [24].

Neonatal medicine, technological advancements such as NICUs, mechanical ventilation, and pharmacological treatments have significantly improved the survival rates of premature infants [25]. NICUs provide specialized medical care, including respiratory support, nutrition management, and developmental care, tailored to the unique needs of preterm babies, optimizing their growth and health outcomes [17,26]. A multidisciplinary team integrating the expertise of neonatologists, nurses, physiotherapists, occupational therapists, speech therapists, psychologists, and social workers provides comprehensive care for preterm infants and their families [2]. Also, environmental adaptations, including equipment like rocking and kangaroo care chairs, reducing noise/light, parent–minor personalization of infant bed area and infant developmental care accessories [e.g., specialized hugging pillow, special pacifiers], or even major NICU structural changes such as the implementation of parent rest rooms or single-family rooms, are aimed towards family-focused practices, aiming to protect parental mental well-being and to improve newborn and family health outcomes [27,28].

The social impact of prematurity extends beyond the NICU, affecting family dynamics, parental mental health, socioeconomic stability, healthcare systems, and long-term developmental outcomes for children [29,30,31,32]. For example, preterm infants are at high risk for respiratory diseases in the future [33]. A percentage of preterm babies will experience developmental delays as well as chronic disabilities of varying degrees due to increased damage to the central nervous system [CNS], behavioral disorders, and learning deficits [6,14]. Also, preterm birth seems to be associated with lower rates of romantic partnerships, sexual intercourse, and parenthood in adulthood [20].

Research highlights the significant socioeconomic consequences of preterm birth, influencing public healthcare policies, healthcare systems, and long-term costs, emphasizing the importance of early interventions [2,26]. Furthermore, systemic factors contribute to challenges for preterm infants and their families. In high-income countries (HICs), though preterm birth rates have declined, they remain disproportionately high among individuals from the most deprived areas and minority race/ethnic groups [34]. Healthcare inequities, like access to high-quality neonatal care, vary by socioeconomic status and geography, leading to disparities in survival and long-term outcomes [31]. Families often face limited parental and social support, emotional distress, financial burdens, and stigma due to prolonged hospital stays and the costs of specialized care. Inadequate parental leave policies and workplace accommodations further strain these families [35]. There are also inequalities in preterm birth rates based on ethnicity and socioeconomic status [36].

In contrast with HICs, in lower- and middle-income countries (LMICs), which account for over 60% of preterm births, inadequate medical infrastructure significantly impacts the survival and health of preterm infants [37]. Poor access to antenatal care, delayed identification of complications, inadequate medical support, lack of skilled birth attendants, and insufficient resources for managing preterm babies highlight the profound inequities in access to adequate care [37,38]. Considering these social, systemic and physiological challenges, addressing prematurity requires not only high-quality medical care and practices but also active and equal parental involvement in the NICU, which fosters a strong dyadic bond between the parent and child, while mitigating the social and emotional impacts on families.

3. Parental Inclusion in the NICU

From the very beginning, infants are active and seek to form meaningful relationships with caregivers in their environment [39]. Their development is shaped by continuous, dynamic, and reciprocal interactions with them in a bidirectional process [40]. Infants can thus be understood as “active and sophisticated partners” within the parent–infant complex social relationship [41]. Long-term follow-up studies further demonstrate that in a child’s efforts to cope with potential impairment, it is equally important for the child’s environment—especially caregivers—to facilitate this compensatory learning process [42,43,44]. This insight is particularly relevant in the NICU environment, where parents and staff are the primary and most fundamental agents of their socialization [42,43].

Historically, NICU models have limited parental involvement [27,28]. The separation between parents and infants due to hospitalization in the NICU can affect parental mental health and their belief in their ability to successfully fulfill their parental role (parental self-efficacy). They feel powerless, alienated, alone—outsiders in their own infant’s life [21,45]. Parents are also distressed by the infant’s small size and immature responses, and mothers are particularly upset by separation and their inability to care for their critically ill infant [45]. Parents often associate their perceived “failure” in handling their preterm infant with their difficulty in interpreting the infant’s cues from the neonatal period onward. They mention that preterm infants respond differently from full-term infants during these early interactions [19].

A shift toward more family-centered care has emphasized the benefits of active participation. Bernstein and colleagues argue that “involving the family as a partner in service planning and focusing on strengthening the parent–child relationship are fundamental for improving the developmental outcomes of children in need” [46]. They emphasize that this, should be a priority for any program or practitioner providing services to young children and their families. Parental inclusion in the NICU is considered a fundamental aspect of modern neonatal care that recognizes the critical role of parents in supporting their premature infants’ medical, emotional, and developmental needs [21]. Parents should not be considered “visitors” in the NICU but rather active caregivers who are parenting—even within the clinical environment. This conceptual shift requires institutional and cultural changes to allow true participation [21]. Active parental involvement has been shown to improve both infant and parental outcomes, reducing stress and enhancing the overall well-being of the family [22]. Benefits of different types of parental inclusion support in NICUs, such as skin-to-skin contact, kangaroo care, breastfeeding, bottle feeding, peer-to-peer support, and educational support for parents, have been reported and have been associated with significant improvements in breastfeeding rates, enhanced weight gain, and prolonged sleep duration among preterm infants [27,28,47].

Parents are encouraged to be present in many NICUs, but their physical presence does not always mean participation. Parental participation levels and inclusion practices may vary significantly depending on unit culture, staff attitudes, and institutional policies [48]. It seems that there is not enough emphasis on parental needs for guidance and psychological support to foster a balanced parenting style. Stegmann-Woessner, G. et al. (2025) cite from an adult born preterm: “Well, there is a guide for dog training and there is no guide for premature baby training” [24]. Research on parental inclusion in NICUs mainly focuses on the mother’s experiences and needs. However, over the last decade, fathers’ experiences have received more attention; fathers and non-birthing caregivers are often overlooked or underrepresented in both research and practice [28,49,50]. Even in NICUs that routinely invite parents to medical rounds—and report higher rates of fathers’ presence—attendance does not necessarily mean participation [51]. While policies like paternity leave and social benefits are important, they alone are not sufficient to ensure fathers’ engagement in neonatal care. Fathers often feel excluded and not fully responsible for their infant care. They often tend to prioritize the mother’s needs over their own, potentially ignoring their own emotional well-being [52]. A supportive care culture within the unit plays a crucial role in encouraging fathers’ participation [51].

Another key focus on parental inclusion practices is that research originates mainly from high-income, Western contexts. There is limited research in LMICs, where inadequate staffing, limited space, cultural beliefs, and lack of parental leave can hinder inclusive practices [34,37]. Moreover, even within Western systems, socioeconomic status, educational level, minority ethnic groups, and cultural expectations can shape how parents are perceived and included in NICU care [35,37]. Addressing these inequities is critical to ensure that inclusive care is not a privilege for a few but accessible to all, considering diversity and adapting practices accordingly [37]. These inequities and the challenges faced by preterm infants and their families highlight the limitations of purely medical approaches and the need to move beyond medical explanations. A social model of prematurity may shift the focus beyond clinical treatment, fostering inclusive and supportive environments that reduce societal barriers and enhance quality of life from the earliest stages of care in the NICU.

4. Social and Medical Model of Disability

To understand prematurity through the social model, we must first review the foundational models that emerged from disability studies. Medical and social models are the predominant models for defining disability [53]. They provide diverse perspectives on how impairment and disability are framed. Historically, disability has been primarily explained through the medical model, according to which an individual is “disabled” due to a biological impairment that needs to be treated or corrected. It emphasizes personal burden and individual tragedy [53]. The medical model is based on values and assumptions about what constitutes a healthy body for the non-disabled population [54], holds a firmly entrenched and powerful position in society, and can influence people’s decisions [55].

The social model originated in the United Kingdom in the 1970s. In the document “Fundamental Principles of Disability”, it is stated that disability is a form of social oppression. Society does not consider, or gives only minimal attention, to people who have physical (biological) impairments, thereby excluding them from participation in basic social activities [56,57]. Key theorists include Vic Finkelstein and Mike Oliver, who influenced the disability movement through their works [57]. According to the social model, the medical model fails to consider “what fits into the broader economy of the individual’s life” [58] and distinguishes between disabilities and impairments. Disabilities are restrictions imposed by society. Impairments are the effects of any given condition. As such, the model views disability as the inability to participate fully in home and community life due to social barriers [58]. This emphasis represented a paradigm shift, promoting inclusion and equality [58,59]. The solution, according to the social model, does not lie in “fixing” the person but in changing society, and medical care should focus on enhancing daily function [57].

The medical and social models, though they are the predominant models for defining disability worldwide, have limitations [57]. Both were conceptualized in high-income Western nations, shaped by robust welfare systems, democratic institutions, strong disability rights movements, and disability activism [57], often disregarding the realities of LMICs [60,61], where inadequate healthcare infrastructure, limited accessibility, and high mortality rates make both models insufficient. Furthermore, in LMICs, violation of human rights, poverty, and political instability position access and survival as more urgent than accessibility and inclusion [61]. Additionally, the status of research in disability is still limited and faces significant challenges [60].

Moreover, Shakespeare critiques the rigid dichotomy between medical and social models of disability (e.g., impairment vs. disability, medical vs. social models). He argues that such binary oppositions oversimplify the realities of disabled people’s lives and disability identity. He advocates for a relational approach that recognizes both embodied experiences [57,62]. Our understanding of the body and the importance of embodied experiences for brain “plasticity,” together with advances in epigenetics, implies that there is a dynamic relationship between biology and the social–environmental context throughout one’s life. Therefore, whatever shapes our social environment can also influence both our body and our brain [63]. Therefore, disability cannot be fully explained by political exclusion alone; it arises from the dynamic interplay between individual impairments and social environments [58]. This critique, combined with persistent inequalities and systemic barriers, even in countries where these models have been established, underscores the necessity of a context-sensitive, intersectional framework. Such a framework would integrate structural, cultural, and embodied dimensions to foster a more globally inclusive disability discourse [62].

Despite the critique, reviewing these models and their limitations may provide foundations for applying similar principles to prematurity to understand the role of social determinants and structural inequalities that shape it.

5. Social and Medical Models of Prematurity

Applying the medical and social models of disability to prematurity allows for a more holistic understanding of the challenges faced by preterm infants and their families. The medical model of prematurity, like the medical model of disability, views preterm birth as a biological deviation from the norm (full-term birth), requiring medical intervention to ensure survival and minimize complications. Under the medical model, the emphasis is placed on diagnosis, treatment, and rehabilitation, with success measured by survival rates and reduced morbidity. This model, while essential for advancing neonatal care [1], may inadvertently medicalize prematurity by framing it solely as a problem to be solved rather than considering broader social determinants.

The concept of a social model of prematurity, like the social model of disability, goes beyond the medical and biological aspects to consider how social contexts and life experiences impact both the incidence of prematurity and the outcomes for preterm infants. Rather than focusing solely on impairments, the model argues that challenges faced by preterm infants and their families are not just due to medical conditions but extend beyond that and are significantly influenced by societal structures and policies. Research in late preterm babies demonstrates that social factors are likely to have stronger influences on developmental outcomes than gestational age [64]. This becomes particularly significant when considering that adults born preterm mention that their greatest challenges are related more to psychological and social difficulties, rather than physical health. They report “feeling of otherness”, due to trauma they associate with premature birth and emotional hyperexcitability, which often lead them to social withdrawal [24].

The social model also highlights systemic factors—such as racial disparities, socioeconomic inequalities, and institutional biases—which play a crucial role in exacerbating the challenges associated with prematurity [65]. For instance, in the United States (U.S.), over 16% of African American infants are born before 37 weeks of gestation compared with less than 11% of white infants [66]. Notably, these disparities persist even among higher-income Black women. These findings suggest that systemic unmeasured experiences of racism, including racism-related stress and adverse environmental exposures, contribute to the risk of premature birth [67]. Braveman and colleagues showed that African-born immigrant women had lower preterm birth rates than U.S.-born Black women. The authors suggested that these most favorable outcomes may reflect African-born women’s comparatively less exposure to racism during sensitive life periods [68]. Low-income women also face greater risk due to limited access to prenatal care, nutritious food, safe housing, and higher exposure to stress and environmental hazards [69]. The intersection of race and poverty further amplifies these risks. For instance, Black women living in poverty may face both racial discrimination and economic barriers, leading to a cumulative effect that further increases the likelihood of preterm birth, highlighting the need to address overlapping structural disadvantages to improve outcomes [70].

Presenting prematurity within the medical and social models of disability, we may highlight aspects of care and support that transcend the simple medical–social dichotomy. Medical support for prematurity cannot be understood as separate from the social context but is deeply embedded within it. Brazelton’s approach offers critical insight in this regard as he emphasized both the individuality and inherently social nature of newborns, demonstrating their need for interaction and relational closeness from the very beginning of life [10,71].

Parental inclusive practices [27,28,47,48], like kangaroo care and skin-to-skin contact, are effective not only in improving biological outcomes, such as weight gain and stabilization of physiological parameters, but also in fostering social interaction and emotional closeness between the neonate and the caregiver. In kangaroo care, placing the infant directly on the caregiver’s body creates physical contact, which is deeply social. What is often interpreted solely as biological or physiological functioning is also profoundly interpersonal (Figure 1). It is not only physical contact that promotes growth and physiological stability, but social intimacy as well. This demonstrates that biological development is, at its core, socially mediated. The implementation of these practices within NICUs further underscores that medical care for prematurity is not neutral or external to society; it is inherently a social issue. This means that the social dimension of medicine is not an “ad-on”. On the contrary, this may mean that medical treatment itself is intrinsically connected to the social model.

Drawing from the social model, we finally argue that prematurity is also socially constructed, much like the socially constructed disability. Based on the narratives of adults born preterm [72], prematurity may be understood as a distinct form of identity that persists across the life course, shaping experiences and social relationships. However, this identity is not neutral; it is produced and mediated through intersections with other social identities—such as race—which influence both the risk of preterm birth and the ways in which neonatal care is accessed and experienced. Also, the very fact of increased preterm birth rates among racial minority groups illustrates that prematurity is also socially produced. The notion of an identity of prematurity highlights that prematurity is shaped not only by biological factors but also by social recognition and access to care.

6. Conclusions

The concept of a social model of prematurity parallels the social model of disability from disability studies, emphasizing how social intimacy, accessibility, and support systems shape developmental outcomes of premature infants. Rather than framing outcomes solely in terms of survival and treatment, it underscores that medical care is neither neutral nor external to society; instead, it is a social issue. Recognizing this interconnectedness opens pathways for more inclusive and holistic practices in prematurity care that are family-centered yet infant-focused. Parental inclusion in NICUs is a powerful tool in addressing some of the social challenges of prematurity. However, it is only one component of a larger framework needed to support preterm infants and their families.

Further research on the lived experiences of adults born preterm could provide valuable insights into that. Future research is also needed to further analyze the paternal presence and participation. Additionally, in an era where identity politics are central, research should also consider prematurity as an aspect of identity and how it may intersect with other aspects of identity, such as race, gender and sexuality. Viewing prematurity through an intersectional framework may further highlight policies to include in social support systems aimed at reducing inequalities and improving long-term outcomes for preterm babies and their families.