Family-Centered Care Practices in Pediatric Intensive Care Units: A Qualitative Study

Introduction

Family-centered care is defined by the Institute for Patient- and Family-Centered Care as an approach to health care grounded in mutually beneficial partnership among patients, families, and providers, organized around the core concepts of dignity and respect, information sharing, participation, and collaboration (Institute for Patient- and Family-Centered Care, 2017). Within pediatric critical care specifically, family-centered care has been associated in prior research with reduced parental anxiety, improved parent-clinician trust, and greater parent satisfaction with the care their child receives, and has accordingly been adopted as a stated organizational priority across the majority of pediatric intensive care units (PICUs) in high-resource health systems (Curley et al., 2012; Meert et al., 2008).

Despite broad philosophical endorsement, the PICU presents a distinct set of conditions that may complicate the enactment of family-centered principles relative to less acute pediatric settings. Rapid clinical deterioration, invasive technology, unfamiliar terminology, and the physical and emotional displacement of parents from their customary caregiving role have each been identified as features of the PICU environment capable of disrupting the parent-clinician partnership that family-centered care presupposes (Shields et al., 2006; Foster et al., 2013). Prior qualitative work in adjacent settings has documented that parents of critically ill children frequently describe a profound loss of parental identity and control alongside a simultaneous, sometimes conflicting, desire to remain closely involved in their child’s care (Board, 2004; Espezel & Canam, 2003).

Much of the existing literature examining family-centered care in the PICU has drawn on parent perspectives in isolation or has relied on survey instruments capturing satisfaction at a single time point, with comparatively fewer studies pairing parent accounts with the perspectives of the clinicians enacting family-centered practices under real-world unit constraints (Coyne, 2015). Understanding both perspectives concurrently is important, as gaps between clinician intention and parent experience, rather than outright disagreement about the value of family-centered care, may represent a more actionable target for practice improvement. The purpose of this qualitative descriptive study was to explore how parents and PICU clinicians experience and enact family-centered care practices, with particular attention to the practices perceived as most supportive by each group and the barriers, structural or interpersonal, that constrain their consistent delivery.

Methods

Design. This study used a qualitative descriptive design employing semi-structured interviews and reflexive thematic analysis (Braun & Clarke, 2019). Reporting followed the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist (Tong et al., 2007).

Setting and sample. Participants were recruited from two PICUs within a single academic pediatric health system between January and August 2025. Parents or primary caregivers of a child admitted to the PICU for a minimum of 72 hours, and PICU clinical staff with a minimum of one year of PICU experience, were eligible. Purposive sampling was used to achieve variation in child diagnosis, length of stay, and, among clinicians, discipline and years of experience. Recruitment continued until the research team judged that thematic saturation had been reached, defined as the point at which successive interviews no longer generated substantively new codes; this was reached at 24 total interviews (16 parents, 8 clinicians).

Data collection. Interviews were conducted individually by a trained qualitative researcher not involved in participants’ clinical care, using a semi-structured guide developed from the family-centered care literature and refined after two pilot interviews. Parent interviews explored experiences of communication, involvement in care and decision-making, and emotional support during the PICU admission. Clinician interviews explored perceived facilitators and barriers to delivering family-centered care under routine unit conditions. Interviews lasted a median of 42 minutes (range 24–68), were audio-recorded, and were transcribed verbatim.

Data analysis. Transcripts were analyzed using Braun and Clarke’s six-phase reflexive thematic analysis approach: familiarization, initial coding, theme generation, theme review, theme definition, and write-up (Braun & Clarke, 2006, 2019). Two researchers independently coded an initial subset of transcripts, compared and discussed coding decisions, and jointly developed a coding framework applied to the remaining transcripts using qualitative data management software. Themes were iteratively reviewed against the full data set and refined through team discussion.

Trustworthiness. Trustworthiness was supported through investigator triangulation during coding, a reflexive journal documenting analytic decisions and researcher assumptions, member checking with a subset of eight participants who reviewed a summary of preliminary themes, and an audit trail linking themes to supporting excerpts, consistent with Lincoln and Guba’s (1985) criteria of credibility, transferability, dependability, and confirmability.

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

Findings

Four major themes were constructed from the data, alongside a cross-cutting subtheme concerning the tension between standardized unit routines and individualized family need, which was present within each of the four major themes and was raised independently by both parent and clinician participants. Theme prevalence across the 24 interviews is summarized in Figure 1, and the relationship among themes is depicted in the conceptual framework in Figure 2.

Theme 1: Communication as the Foundation of Trust

Both parents and clinicians described communication, particularly its consistency, honesty, and pacing, as the single factor most responsible for whether parents felt like informed partners in their child’s care or like outside observers of it. Parents repeatedly contrasted clinicians who proactively checked in and explained the reasoning behind changes in the plan of care with those who delivered information only when directly asked. Clinicians, in turn, described communication as an area where good intentions were frequently undermined by time pressure, particularly during high-acuity shifts, and by inconsistency across the multiple disciplines a family might encounter over the course of a single day. Several clinician participants specifically identified structured, predictable communication touchpoints, such as bedside rounds that intentionally included the family, as a practice that reduced this inconsistency without requiring substantial additional time.

Theme 2: Presence and Participation as Acts of Parenting

Parents frequently described small, hands-on caregiving tasks, bathing, repositioning, reading aloud, being present for procedures when permitted, as meaningful not primarily because of their clinical value but because they preserved a sense of parental identity that admission to the PICU had otherwise stripped away. Clinicians largely affirmed the value of this participation but also described genuine tension between supporting family presence and managing unit workflow during acute events, procedures, or rounds involving multiple patients, a tension several clinicians described navigating through case-by-case judgment rather than a clear unit-wide standard.

Theme 3: Emotional Recognition and the Invisible Labor of Coping

Parents described substantial and often unaddressed emotional burden accompanying a PICU admission, including chronic sleep disruption, strain on other family members, and a persistent, low-level fear that a clinical update might arrive at any moment. Several parents noted that emotional acknowledgment, a clinician pausing to ask how the parent themselves was doing, distinct from clinical updates about the child, was rare but disproportionately memorable when it occurred. Clinicians, particularly nursing and child life participants, described emotional support as a role they valued but often deprioritized relative to clinical tasks during busy shifts, and several expressed a desire for more structured integration of psychosocial support, rather than relying on it occurring informally or only when a crisis prompted it.

Theme 4: Navigating an Unfamiliar and Technologically Mediated Environment

Parents described the sensory and cognitive burden of the PICU environment itself, unfamiliar alarms, monitors, and equipment, as a barrier to feeling like an active participant in care, particularly during the earliest days of admission before terminology and routines became familiar. Several parents described a specific fear of touching their child incorrectly or interfering with equipment, which some clinicians corroborated as an underrecognized barrier to encouraging family presence at the bedside. Clinicians identified brief, deliberate orientation to the environment and equipment early in the admission as a practice that meaningfully reduced this barrier when it occurred, though several noted it was inconsistently prioritized during the clinically demanding first hours after admission.

Discussion

This qualitative study found that parents and PICU clinicians described a largely shared vision of what family-centered care should look like in practice, characterized by consistent communication, meaningful opportunities for hands-on participation, explicit emotional acknowledgment, and deliberate orientation to an unfamiliar environment. Notably, disagreement between parent and clinician accounts was infrequent; rather, the primary tension identified across nearly three-quarters of interviews concerned the difficulty of reconciling standardized unit routines with the individualized needs of a given family, a structural and workload-related barrier rather than a difference in underlying values. This pattern is broadly consistent with prior qualitative work suggesting that gaps in family-centered care delivery in critical care settings more often reflect systemic and organizational constraints than a lack of clinician commitment to family-centered principles (Coyne, 2015; Smith et al., 2017).

The prominence of communication as the most frequently and most strongly endorsed theme is consistent with a substantial existing literature identifying communication quality as a primary driver of family trust and satisfaction in pediatric and adult critical care settings alike (Meert et al., 2008; Davidson et al., 2017). What this study adds is the clinician-side observation that structured, predictable communication touchpoints, rather than simply more communication in the aggregate, appeared to be what most reliably closed the gap between clinician intention and parent experience, suggesting that interventions targeting the structure and timing of communication, such as family-inclusive bedside rounding, may be a more tractable lever than efforts aimed generally at increasing communication frequency.

The theme of presence and participation as an act of parenting, rather than as a clinically instrumental behavior, extends prior theoretical work characterizing parental identity disruption as a central psychological feature of the PICU experience (Board, 2004; Espezel & Canam, 2003). Framing small caregiving tasks as identity-restorative, rather than only as family-centered care “best practice,” may help clinicians recognize why seemingly minor accommodations, being permitted to hold a child’s hand during a procedure, being invited to assist with a bath, carried disproportionate meaning for parent participants in this study relative to their apparent clinical significance.

The relative underrecognition of parental emotional burden identified in Theme 3, despite clinician participants’ stated valuing of emotional support, is consistent with prior findings that psychosocial support in critical care settings is frequently treated as informal and clinician-discretionary rather than as a structured component of care delivery (Melnyk et al., 2004). Clinician participants’ own framing, that emotional support was valued but consistently deprioritized under workload pressure, suggests that structural integration, for example through routinized check-ins led by nursing or child life staff, may be more sustainable than relying on individual clinician initiative alone.

Several limitations should be considered. This study was conducted within two PICUs in a single academic health system, and the transferability of findings to community or resource-limited PICU settings, where staffing ratios and available psychosocial support infrastructure may differ substantially, should be considered carefully rather than assumed. Parent participants were predominantly mothers, and the perspectives of fathers, extended family caregivers, and non-English-speaking families, who may experience distinct barriers to family-centered care participation, were not proportionally represented in this sample. Finally, as with all qualitative interview-based research, findings reflect participants’ retrospective accounts of their experience rather than direct observation of care delivery, and may be subject to recall and social desirability influences.

Future research should incorporate direct observation of family-centered care practices alongside interview data to examine the degree of alignment between described and enacted practice, and should specifically recruit fathers, extended caregivers, and linguistically diverse families to examine whether the themes identified here generalize across a broader range of family structures and backgrounds. Intervention studies testing structured communication protocols and routinized emotional support check-ins, the two most concretely actionable findings from this study, would help establish whether formalizing these currently informal practices produces measurable improvement in parent-reported experience. Taken together, these findings suggest that advancing family-centered care in the PICU may depend less on persuading clinicians of its value, which appears largely already accepted, and more on providing the structural supports, protected time, standardized communication touchpoints, and routinized psychosocial check-ins, that allow already-endorsed principles to be enacted consistently under real-world unit conditions.

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