Parental Involvement in Neonatal Intensive Care Unit Decision-Making: Nurses’ Perspectives

Introduction

Parental involvement in decision-making is a foundational principle of family-centered care and is understood in the neonatal literature to encompass more than the provision of information, extending to genuine participation in weighing options, expressing preference, and shaping the plan of care for a critically or chronically ill infant (Gooding et al., 2011). Prior research has consistently linked meaningful parental involvement to reduced parental stress and improved parent-team trust, while also documenting that the intensity, unpredictability, and technological complexity of the NICU environment can constrain the degree to which this involvement is realized in practice (Hall et al., 2015; Wigert et al., 2013).

Bedside nurses occupy a distinctive position within this dynamic. Unlike physicians, who typically interact with a given family in comparatively brief, scheduled encounters, NICU nurses are present at the bedside across extended shifts, accumulating detailed knowledge of a family’s coping style, communication preference, and evolving readiness for information that is not always fully visible to, or communicated with, the broader medical team (Wigert et al., 2013; Cockcroft, 2012). Prior qualitative work has characterized nurses as occupying a position between families and physicians during difficult decisions, variously described as advocate, translator, or buffer, though this literature has more often examined end-of-life decision-making specifically than the broader, more continuous decision-making that characterizes routine NICU care (Kavanaugh et al., 2010; Krick et al., 2020).

Comparatively less attention has been paid to the process by which nurses themselves determine how much decision-making space to open for a given family, how this determination is made moment to moment across a NICU admission, and how nurses navigate the resulting position when parental preference and clinical judgment appear to diverge. Understanding this process from nurses’ own perspective is important because nurses are frequently positioned, formally or informally, as key facilitators of family-centered care, yet the specific cognitive and relational work involved in that facilitation role remains comparatively undertheorized. The purpose of this constructivist grounded theory study was to explore NICU nurses’ perspectives on and experiences of facilitating parental involvement in decision-making, with the aim of developing a theoretical model of the process by which nurses navigate this role in practice.

Methods

Design. This study used a constructivist grounded theory design (Charmaz, 2014), selected because the research question concerned an underexplored social process, nurses’ ongoing facilitation of parental involvement, for which the goal was development of an explanatory theoretical model grounded in participants’ own accounts, rather than description of a fixed set of pre-defined themes. Reporting followed the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist (Tong et al., 2007).

Setting and sample. Participants were registered nurses employed in one of two level III/IV NICUs within a single academic health system, recruited between February and November 2025. Initial purposive sampling targeted variation in years of NICU experience and shift pattern; subsequent theoretical sampling was used to recruit participants able to speak specifically to emerging categories, including two nurses with formal palliative care liaison responsibilities and three nurses new to the specialty within the past two years. Interviews continued until the research team judged theoretical saturation had been reached, defined as the point at which no new properties of the core category emerged from successive interviews and existing categories were well-developed and interrelated; this was reached at 22 interviews.

Data collection. Individual, semi-structured interviews were conducted by a researcher with prior NICU clinical experience, using an interview guide that evolved iteratively as analysis proceeded, consistent with grounded theory’s iterative approach to data collection and analysis. Early interviews explored broad experiences of working with families during decision-making; later interviews included more targeted questions developed from emerging categories, such as how nurses recognized a family’s readiness for a difficult conversation or how they responded when a family’s preference appeared to conflict with the team’s recommendation. Interviews lasted a median of 47 minutes (range 31–72), were audio-recorded, and were transcribed verbatim.

Data analysis. Data collection and analysis proceeded concurrently and iteratively using constant comparative analysis, in which each new transcript was compared against previously coded data to refine emerging categories (Charmaz, 2014; Corbin & Strauss, 2015). Analysis proceeded through initial line-by-line coding, focused coding to identify the most significant and frequent initial codes, and theoretical coding to specify relationships among focused codes, culminating in identification of a core category that accounted for the central process observed across the data set. Extensive analytic memo-writing accompanied each stage of coding and directly informed subsequent theoretical sampling decisions.

Trustworthiness. Trustworthiness was supported through detailed memo-writing documenting analytic decisions and researcher reflexivity, regular peer debriefing with the full research team throughout data collection and analysis, and member checking in which a summary of the emerging theoretical model was reviewed by six participants, whose feedback was incorporated into the final model.

Ethical considerations. The study was approved by the health system’s institutional review board. Written informed consent was obtained from all participants. Pseudonyms are used throughout in place of participant identifiers.

Findings

Constant comparative analysis of the 22 interviews resulted in a core category, calibrating the space for parental voice, which characterized the central, continuously recurring process by which nurses assessed and adjusted how much decision-making space to open for a given family at a given moment across the course of a NICU admission. Rather than a single decision made once, participants consistently described this calibration as an ongoing, situational judgment, revisited many times a day and adjusted based on the infant’s clinical status, the family’s visible emotional state, and the composition and communication style of the medical team on a given shift. Four interrelated categories, depicted in the process model in Figure 1, together constituted this core process.

Reading Readiness and Capacity

Participants described continuously assessing a family’s emotional and cognitive readiness to receive information or engage in a decision, drawing on subtle cues, eye contact, question-asking behavior, body language at the bedside, that nurses described accumulating over repeated shifts in a way that was rarely explicitly documented or communicated to the broader team. Several participants distinguished this ongoing, informal assessment from the more formal, episodic readiness assessment that might occur before a scheduled family meeting, describing the informal, moment-to-moment version as equally, if not more, consequential for whether a family felt genuinely involved.

Opening and Protecting Space

Nurses described actively creating opportunities for parents to ask questions or express preference, ranging from small, low-stakes prompts during routine care to more deliberate efforts to ensure a parent’s question was raised during rounds when the parent themselves was hesitant to interject. Several participants described this as requiring active protection, particularly during busy rounds where a family’s slower pace of processing information could be inadvertently overridden by the team’s more clinically paced discussion, a dynamic nurses described intervening in by explicitly slowing the pace or redirecting a question back to the family.

Bridging Family and Medical Team

Participants frequently described translating between the medical team’s clinical framing of a decision and language more accessible and emotionally attuned to a given family’s state, as well as conveying family concerns or preferences back to the team when a family had not raised them directly during a formal encounter. This bridging role was described as most active during high-stakes or rapidly evolving decisions, when the pace of clinical communication was described as least accommodating of a family’s slower processing timeline.

Absorbing Tension

Participants described a distinct form of emotional and relational labor occurring when a family’s expressed preference appeared to diverge from the team’s clinical recommendation, a situation in which nurses described positioning themselves between the two parties, validating the family’s perspective while also supporting the clinical plan, without either dismissing family concerns or undermining team cohesion. Several participants described this specific category as the most professionally demanding aspect of the broader calibration process, and several noted that it was the category least explicitly acknowledged or supported by formal unit structures, despite occurring routinely.

Discussion

This grounded theory study found that NICU nurses do not experience their facilitation of parental involvement in decision-making as a discrete task performed at defined points, such as before a scheduled family meeting, but as a continuous, situational process of calibration, revisited and adjusted many times across a single shift in response to shifting family readiness, clinical acuity, and team dynamics. This finding extends prior work characterizing nurses as occupying a position between families and the medical team during difficult decisions (Kavanaugh et al., 2010; Krick et al., 2020) by specifying the underlying process through which that position is actively and continuously constructed, rather than passively occupied.

The prominence and near-universal endorsement of the reading readiness and capacity category is consistent with prior literature emphasizing the importance of individualized, family-specific communication timing in family-centered neonatal care (Hall et al., 2015), while extending this literature by locating the primary site of this individualized assessment specifically with bedside nurses, whose accumulated, informal observations were described by participants as frequently exceeding what was captured in formal team communication or documentation. This finding raises a structural question for NICU teams: whether existing rounding and handoff structures adequately surface the informal readiness assessment nurses described performing continuously, or whether this knowledge remains largely tacit and underutilized by the broader team.

The absorbing tension category, while endorsed by a smaller proportion of participants than the other three categories, was consistently described by those who raised it as the most professionally demanding component of the broader calibration process, and as the component least explicitly acknowledged or supported by formal unit structures. This pattern is consistent with prior literature documenting moral distress among neonatal nurses navigating divergence between family preference and clinical recommendation, particularly in the context of end-of-life or high-stakes treatment decisions (Cockcroft, 2012). The present findings suggest this tension-absorbing labor may be a more routine, lower-intensity but still consequential feature of everyday NICU practice, not confined only to the most extreme decision-making scenarios examined in prior moral distress literature.

Several limitations should be considered. This study was conducted within two NICUs in a single academic health system, and while participants varied in experience and shift pattern, transferability to community NICU settings with different staffing models or team communication structures should be considered carefully. As a study of nurses’ perspectives specifically, this theoretical model represents nurses’ own account of their facilitation process and does not independently verify how parents themselves experienced the resulting involvement, nor how physicians perceived nurses’ role in these interactions; these represent important complementary perspectives for future research. Finally, as with all grounded theory research, the resulting model reflects the analytic interpretation of this specific research team, and while trustworthiness was supported through memo-writing, peer debriefing, and member checking, alternative theoretical framings of the same data remain possible.

Future research should examine parent and physician perspectives on the same calibration process to assess the degree of alignment across all three parties involved in NICU decision-making, and should evaluate whether explicit acknowledgment of nurses’ calibration role within formal rounding structures, for example through routinely inviting nurse input on family readiness before or during rounds, measurably improves the consistency of parental involvement or reduces the emotional burden nurses described in the absorbing tension category. Taken together, these findings suggest that NICU nurses function as active, continuously recalibrating mediators of parental involvement in decision-making, a role that is presently substantial but under-recognized in formal team structures, and one that may be better supported through explicit acknowledgment, structured training, and protected time within existing communication and rounding practices.

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