Through Parents' Eyes: Reframing Neonatal Pain Assessment Through Lived Experience

Neonatal pain is not only real, but also biologically encoded, clinically observable, and developmentally consequential. Decades of research have dismantled outdated assumptions that newborns do not feel pain, revealing instead a complex interplay of behavioral, physiological, and neurodevelopmental responses to distress [1]. Repeated pain exposure in preterm infants can lead to structural brain changes and worse neurodevelopmental outcomes [2]. Pain in neonates remains frequently under-recognized and undertreated, particularly in high-acuity settings where procedural urgency can eclipse relational care [3]. It has been recognized that it is significantly important for parents to know that their baby's pain is well managed [4]. Clinicians often rely on validated assessment tools such as structured scales to detect pain, but these instruments, while essential, are inherently limited. They capture snapshots of discomfort but rarely the full spectrum of suffering [5]. Subtle cues such as changes in cry and color, muscle tone, or gaze may be missed or misinterpreted, especially when assessments are rushed or retrospective. Furthermore, physiological indicators which are associated with pain are often confounded by underlying illness, instability, and effects of medications. This highlights the importance of multimodal assessments that integrate behavioral and physiological markers. Meanwhile, parents who are evolutionarily attuned to their infant's distress are seldom invited to participate meaningfully in pain assessment or management [6]. Their insights, grounded in proximity and emotional resonance, are undervalued in clinical decision-making. This disconnect is not merely procedural; it is deeply relational, emotional, and systemic. It underscores a broader controversy in neonatal and pediatric pain management; namely the systematic marginalization of experiential knowledge such as parental observations and clinicians' intuitive awareness, in favor of clinical objectivity. As neonatal care advances, our frameworks for understanding pain must transcend a reductionist, physiological lens to encompass its relational and affective dimensions as a shared human experience [7]. This tension raises critical questions about how evidence-based practice can meaningfully integrate subjective insights without compromising scientific rigor. Addressing this challenge demands more than technological innovation; it calls for a profound cultural transformation toward family-integrated pain care, where parents are recognized not as passive observers but as indispensable partners in alleviating suffering [8]. This commentary seeks to advance that transformation. Drawing on clinical observations, existing evidence, and ethical imperatives, we argue for a paradigm shift toward family-integrated pain care (FIPC). We propose conceptual framing and practical recommendations to embed parental participation into neonatal pain assessment and management through education, documentation, and institutional support so that infant pain care becomes a shared responsibility rather than a solitary clinical act. Elijah was born at 26 + 6 weeks gestation, weighing just 660 g, and immediately entered the NICU. Within his first week, he developed necrotising enterocolitis and underwent multiple surgeries. His NICU journey was marked by daily painful procedures such as intubations, blood transfusions, cannulations, stoma care, and retinal examinations. Elijah's parents were initially unaware that premature infants could experience pain, a misconception that is not uncommon. This lack of understanding was addressed early through a parent education booklet developed by NICU, which introduced them to the concept of neonatal pain and its management. This resource became a turning point, revealing not only the reality of neonatal pain but also the possibility of parental involvement in alleviating it. Following procedures, Elijah often struggled to settle and sleep, which was distressing for his parents. They found ways to comfort him through gentle touch, containment, and non-nutritive sucking, but skin-to-skin care proved most effective for both. Nurses played a pivotal role in educating and encouraging their participation, transforming passive observation into active caregiving. They discussed pain management openly, invited the parents to be present at the bedside, and employed a combination of pharmacological and non-pharmacological strategies consistent with evidence-based practice. Elijah's parents valued being actively involved in his care, including administering sucrose prior to painful procedures, as this helped them feel engaged and useful in supporting their infant. They highlighted that empowering and educating parents is essential to family-centred care. Elijah's story illustrates the relational and emotional complexity of neonatal pain care and highlights the systemic tension between clinical objectivity and experiential knowledge; a challenge also reflected in the literature. Glenzel, do Nascimento Oliveira, and Marchi [9] emphasize that while validated pain and behavioral scales for preterm infants provide essential clinical objectivity, their reliability and validity depend on consistent interpretation and contextual understanding, elements that parental experiential knowledge can complement but not replace. While evidence-based protocols provide essential safeguards, they often fail to capture the lived realities of families navigating the NICU. This disconnect raises critical questions about how neonatal pain frameworks can integrate parental insights without compromising scientific rigor and underscores the need for cultural transformation toward family-integrated care. Yet, barriers for parents remained such as emotional overwhelm, lack of confidence, and variability in staff support often limited their ability to advocate for Elijah's comfort, especially during routine procedures perceived as minor but now recognized as painful. These challenges are consistent with findings by Neshat et al. [10], who reported that care providers identified emotional distress, insufficient knowledge, and inconsistent professional support as key barriers to maternal participation in neonatal pain management. These constraints reveal that without addressing the structural and relational gaps that silence parental voices, the promise of family-integrated care risks becoming aspirational rather than actionable. Elijah's story exemplifies the lived realities behind neonatal pain care and underscores why the debate over clinical objectivity versus experiential subjectivity is far from theoretical; it shapes every interaction at the bedside. Structured tools such as the Modified Pain Assessment Tool (MPAT), Neonatal Pain Assessment Score (NPASS), Neonatal Infant Pain Scale (NIPS), Premature Infant Pain Profile (PIPP-R), and COMFORTneo have become standard in neonatal units, offering quantifiable metrics for pain detection [11, 12]. Yet in practice, these tools are often reduced to perfunctory checklists, completed retrospectively, inconsistently, or without meaningful interpretation [13]. This mechanistic approach risks flattening the complexity of infant suffering into numerical scores, detached from the relational context in which pain is experienced. Neonatal pain is not merely physiological; it is an interpersonal phenomenon, deeply embedded in the infant–caregiver dyad [14]. Parents, by virtue of proximity, repeated interaction, and emotional investment, often notice subtle shifts in cry quality, color, tone, gaze, consolability, and state regulation that may escape time-pressured clinical observation. This is true for neonates, including babies who have just been born, but it is also developmentally specific: neonatal cues are more subtle than those of older infants, and parental accuracy and confidence are shaped by prematurity, sedation, separation, parental stress, and the availability of early caregiving opportunities such as skin-to-skin or rooming-in [15]. Importantly, attunement is supported rather than assumed; brief coaching, shared vocabulary for behavioral cues, and structured participation during predictable procedures can enhance parents' ability to recognize and communicate neonatal distress [16]. Despite this potential, parental insights remain under-invited in formal assessment processes [5]. Studies frequently report that parents rate infant pain higher than clinicians [6, 17]. Rather than dismissing this difference as emotional exaggeration, we interpret it as epistemically meaningful: relational proximity may heighten sensitivity to distress signals that scales can underweight or miss, particularly when infants have atypical physiology or when assessments are rushed. A shared-assessment approach: pairing validated scales with structured parental observations and brief pre−/post-procedure huddles can reconcile these perspectives, improve timeliness of comfort measures, and enrich interpretation of scores [5, 11, 12, 14]. At the same time, an impartial account must acknowledge potential downsides and ethical guardrails. Parental participation, if poorly supported, can increase anxiety [18], lead to misinterpretation of ambiguous cues, or on occasion yield disagreement with staff about analgesia or the conduct of procedures [19]. Cultural beliefs, prior experiences, or mistrust may contribute to preferences that diverge from evidence-based recommendations, including rare instances of declining analgesia or favoring non-validated strategies [20, 21]. The ethics of family-integrated care in the NICU emphasize that inclusion must not cause harm: clear role definitions, transparent communication of risks and benefits, and structured escalation and mediation pathways are essential when perspectives differ [21]. To operationalize this balance, we propose (i) routine documentation fields for parental observations alongside scale scores; (ii) brief “comfort plan” agreements before predictable procedures; (iii) teach-back to confirm shared understanding; and (iv) defined steps for conflict resolution (second opinions, senior review, or ethics consultation) when consensus cannot be reached. These safeguards respect parental expertise while preserving clinical responsibility for the infant's best interests. In sum, developmental nuance and ethical proportionality are crucial. Parents can be meaningfully attuned to neonatal distress from birth, but attunement improves with proximity, support, and practice; neonatal care teams can and should cultivate this capability. Integrating parental observations with validated tools offers a pragmatic path that honors both clinical objectivity and experiential knowledge, while explicit guardrails ensure that family inclusion enhances, rather than compromises, the safety and quality of pain care [14, 20, 21]. Parental involvement in neonatal pain management is often constrained by a constellation of systemic and emotional barriers. These include limited education on infant pain and management, fear of disrupting clinical workflows, inconsistent communication from healthcare providers, and culturally embedded beliefs about parental roles in medical settings [22]. In Elijah's case, lack of knowledge and confidence and emotional exhaustion significantly hindered his parents' ability to confidently advocate for his comfort. This was particularly evident during routine procedures which, although regarded as minor by clinicians, were nonetheless painful for Elijah and emotionally draining for his parents, who found it difficult to witness his repeated pain and discomfort. Health literacy gaps likely amplified this hesitancy: uncertainty about their rights, limited awareness of analgesic and non-pharmacological options, and not knowing how to raise concerns within the team made advocacy feel risky rather than invited [15, 16]. Structural constraints such as insufficient private space for skin-to-skin care and staffing ratios that limit education time further dampened participation. These conditions signal the need for policy and practice reforms that normalize, resource, and measure parental participation as part of standard pain care. Crucially, parents' lack of formal neonatal knowledge is modifiable and responsive to targeted support [6]. Evidence from a Cochrane review of psychological interventions for parents of children with chronic illness shows that structured, brief, and often scalable interventions (including skills training, cognitive-behavioral strategies, and psychoeducation) can reduce parental distress, improve coping and caregiving behaviors, and enhance family functioning [22]. Translating these principles to the NICU, a scaffolded capability pathway can build competence from the earliest days of life: (i) just-in-time micro-teaching (2–3 min) before predictable procedures to introduce a shared vocabulary for behavioral cues (facial tension, state regulation, consolability) and unit comfort options (e.g., sucrose, facilitated tucking, skin-to-skin); (ii) teach-back to confirm understanding (“Which signs will you watch for, and what will we try first?”); (iii) co-created comfort plans documented alongside pain scores and revisited in brief debriefs; and (iv) light-touch orientation and simulation (short videos or bedside walk-throughs) so parents can practise positioning, swaddling, and comforting techniques. Accessible tools such as visual cue cards, multilingual handouts, and QR-linked micro-learning sustain learning amid stress and shift changes, while workflow integration for example a designated “parental observations” field next to validated pain scores signals that parental input is expected and auditable for quality improvement [22]. Such barriers are not isolated; they echo across diverse clinical contexts, from chronic pain management in children with cerebral palsy to postoperative care in resource-limited settings [5]. Parents often turn to non-pharmacological strategies such as holding, soothing, and distraction, not necessarily because they prefer or fully understand these methods, but because they feel compelled to do something tangible to comfort their child in moments of distress. These acts of comfort, while deeply human, are frequently deployed in the absence of formal guidance, constrained by gaps in knowledge, access, and empowerment [6]. In Elijah's care, his parents placed trust in the medical team to ensure his comfort, and as a result, they rarely questioned clinical decisions. This reliance on instinctive care reflects both the resilience and the vulnerability of families navigating neonatal pain. Without open communication, adequate information and structured support, parents may feel emotionally overwhelmed, hesitant to intervene, or unsure of their legitimacy in clinical spaces [21]. By adopting evidence-informed parent-support strategies [22] and ethical guardrails for disagreement [21], units can convert goodwill into capability and capability into measurable outcomes so that parents are equipped to act confidently, safely, and consistently alongside clinicians in alleviating neonatal pain. Effective pain management in neonates must go beyond recognition; it must lead to timely, compassionate, and evidence-based relief. While validated assessment tools provide a foundation, they must be paired with interventions that actively engage families in the care process [21]. A growing body of evidence supports the efficacy of skin-to-skin contact, sucrose administration, facilitated tucking, and gentle touch, interventions that not only soothe infants but also empower parents as therapeutic agents [14, 15, 23]. When partnering with parents, a uniform approach is neither feasible nor appropriate. While some parents welcome opportunities for involvement, others may feel unprepared or unable to actively participate in their infant's care [24]. This variability is shaped by multiple factors, including prior trauma, mental health challenges, and cultural norms that influence perceptions of parental roles and pain management. Recognizing these differences underscores the importance of individualized strategies that respect each family's capacity and readiness for engagement. Embedding such approaches into routine neonatal practice affirms the family's central role and transforms pain care from a clinician-led protocol into a collaborative endeavor. When parents are trained, supported, and invited to participate, pain management becomes relational, responsive, and resilient [19]. Programs such as the Comfort Ability Program [25] exemplify this shift toward empowerment through education, demonstrating that targeted parental training can lead to measurable improvements in self-efficacy, emotional regulation, and pain-related outcomes. Ickmans et al. [26] confirmed these findings, highlighting the program's effectiveness in enhancing adaptive coping strategies and reducing pain-related distress among children and their caregivers. Elijah's parents valued being included in his care, particularly administering sucrose prior to painful procedures, as it gave them a sense of contribution. They suggested that parents would benefit from education on interpreting pain cues and being actively involved in decisions regarding pain management. Furthermore, they emphasized the importance of parents understanding that their involvement can make a meaningful difference in providing comfort and care. Encouraging parental participation not only supports the infant but also fosters bonding. Technical innovations offer new frontiers for family-integrated pain care. Virtual reality platforms, Artificial-intelligence-driven pain tracking apps, and digital coaching tools have the potential to democratize access and personalize interventions. However, their success depends on more than technological novelty; it requires equitable implementation, caregiver engagement, and culturally sensitive design [27]. Without this commitment, innovation risks could be excluded, reinforcing systemic barriers rather than dismantling them. Elijah's parents suggested that consistent education and allowing parents to be hands-on makes the biggest difference in NICU. To sustain meaningful change, policy must move beyond aspiration to implementation. Family-centred care should be embedded not only in clinical guidelines but also in medical and nursing education, research funding priorities, and institutional culture. This means curricula must incorporate simulation-based training that reflects parental perspectives and shared decision-making; clinical documentation should include parental observations alongside validated pain scales; and research trials must pre-specify caregiver outcomes such as confidence, burden, and trust, alongside infant pain metrics. Health systems must invest in infrastructure that enables continuous parental presence and participation, supported by staff training and digital tools that facilitate co-assessment and comfort planning. Infant pain management is not a solo act; it is a shared responsibility. When parents are equipped and invited to act, the benefits extend beyond the bedside to trust, learning, and sustainable quality improvement. Cheng et al. [28] that structured family-integrated care pain outcomes and in complex analgesic contexts, while et al. highlighted the ethical of families in NICU care to enhance trust, reduce and collaborative decision-making. these findings the shift from to practice and provide a for family-integrated pain care across education, and health Neonatal pain is not a solitary it is a shared that the resilience of infants, and healthcare systems Elijah's story the of parental involvement, not only in alleviating pain but in emotional confidence, and His journey highlights a critical that when parents are to participate, pain care becomes more more and more To advance neonatal pain management, clinicians must move beyond procedural assessment toward relational care. 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