Current applications and future perspectives of family-integrated care in the pediatric intensive care unit: a narrative review from concept to practice

Introduction

Background and rationale

Pediatric intensive care unit (PICU) admission can be stressful for both children and their families, and survivors may experience persistent physical, cognitive, emotional, and social impairments after discharge, collectively referred to as post-intensive care syndrome in pediatrics (PICS-p) (1,2). Post-traumatic stress symptoms are also clinically relevant for child survivors; a recent systematic review and meta-analysis reported that approximately one in three pediatric intensive care survivors screened positive for post-traumatic stress disorder (PTSD) several months after PICU admission (3). Parents and caregivers may likewise experience anxiety, depression, post-traumatic stress symptoms, and disruption of family functioning after a child’s critical illness (4-6). PICS-p is therefore an important context for this review, but it is not the only outcome through which family-integrated care (FIC) should be evaluated.

From restricted visitation to FIC

Family-centered care (FCC) emphasizes respect, information sharing, participation, and collaboration between families and healthcare professionals (7). In the PICU, FIC operationalizes these principles by supporting parents and caregivers to participate, when clinically appropriate, in comfort measures, routine care, symptom observation, rehabilitation activities, communication, and shared decision-making (8-11).

Implementation remains inconsistent. Families may encounter restrictive visitation policies, limited bedside roles, language or cultural barriers, emotional distress, and uncertainty about how they can safely participate, while clinicians may worry about workload, safety, and workflow disruption (8,12,13). These barriers justify a focused synthesis of how FIC is currently defined, implemented, and supported in pediatric critical care.

Objective

This narrative review has two objectives: first, to summarize how FIC is currently implemented in the PICU, including routine care, communication, shared decision-making, rehabilitation, psychosocial support, and transition planning; and second, to synthesize reported benefits, barriers, and implementation strategies for children, families, clinicians, and health systems. We present this article in accordance with the Narrative Review reporting checklist (available at https://tp.amegroups.com/article/view/10.21037/tp-2026-0270/rc).

Methods

A narrative literature search was conducted to capture the current landscape of FIC/FCC in pediatric critical care. This review was not designed as a systematic review, and we therefore did not restrict eligibility to randomized or controlled interventional studies. We searched PubMed/MEDLINE, CINAHL, Embase, Web of Science, and the Cochrane Library. Because FIC research is often observational, qualitative, mixed-methods, quality-improvement, or pre-post in design, these study types were eligible when they addressed implementation, experience, outcomes, or barriers relevant to family participation in PICU care. We prioritized literature published from 2015 to April 2026 to reflect contemporary PICU practice, while retaining selected older foundational papers when they clarified key concepts. The search combined terms for the PICU population, family participation models, and child/family/system outcomes. Details of the search and selection approach are summarized in Table 1.

Conceptual foundations and core themes

Evolution and core attributes of FCC in the PICU

FCC provides the conceptual foundation for FIC by emphasizing respect for family values, transparent information sharing, collaborative relationships, and support for family participation (7,14). In this review, FCC refers to the broader philosophy of care, whereas FIC refers to the practical implementation of family participation in PICU routines, communication, rehabilitation, decision-making, and transition planning. The abbreviation FIC is used consistently for FIC.

In contemporary PICU practice, FIC extends beyond visitation. When safety and family preference permit, parents may contribute to comforting, feeding support, hygiene, positioning, symptom observation, rehabilitation activities, and communication with clinicians (11). This transition reframes parents from passive visitors to care partners while preserving professional responsibility for clinical decision-making and safety.

Qualitative and mixed-methods evidence suggests that families value welcoming staff attitudes, clear information, and explicit permission to participate in care (11,15). However, partnership remains uneven, particularly during high-stakes decisions or technically complex care, where families may need structured communication and repeated opportunities to clarify their goals and concerns (15,16).

Taken together, the central themes of FIC in the PICU are family role, communication and shared decision-making, and holistic clinical focus. These themes are summarized in Table 2 and provide the framework for the subsequent sections.

The rationale for family integration in mitigating PICS-p

FIC is relevant to PICS-p because the syndrome affects both child and family functioning after critical illness (1,2,6). Rather than redefining PICS-p, this section emphasizes how family participation may support recovery: parents can help clinicians understand the child’s baseline behavior, reinforce comfort and rehabilitation activities, and prepare for caregiving after discharge (5,17,18).

Available evidence suggests that partnership-based interventions may reduce parental stress and improve family experience, although effects vary by intervention type, context, and outcome measured (15). These findings support FIC as a promising implementation approach, but they do not establish a uniform effect on all PICS-p domains.

Because families and children prioritize function, comfort, communication, and quality of life after critical illness, FIC should be evaluated using both patient- and family-centered outcomes rather than mortality or ICU length of stay alone (18), as shown in Figure 1.

Figure 1 Conceptual framework illustrating how FIC mitigates PICS-p. FIC, family-integrated care; ICU, intensive care unit; PICS-p, post-intensive care syndrome in pediatrics; PICU, pediatric intensive care unit; PTSS, post-traumatic stress symptoms.

Current clinical practice models

Integration into routine care and symptom management

Family participation in routine care is most feasible when tasks are clearly defined, voluntary, and supervised. Examples include comforting, oral care, positioning, participation in non-pharmacological pain or delirium prevention strategies, and support during rehabilitation activities (19-24). These activities may improve family confidence and help clinicians interpret the child’s comfort, behavior, and baseline function, but they should be adapted to acuity, developmental stage, infection-control requirements, and family preference.

Shared decision-making and goal setting

Shared decision-making is another major domain of FIC. Families should receive understandable, repeated, and culturally appropriate information about the child’s condition, treatment options, expected burdens, and uncertainty. This is particularly important during goal setting, escalation or limitation of therapies, and palliative or end-of-life discussions (25-27).

Application of the “F” (family) element in the pediatric ABCDEF bundle

The family engagement element of pediatric ABCDEF-based care can be incorporated into both routine care and shared decision-making rather than treated as a separate domain. In practice, families may support non-pharmacological delirium prevention, comfort, sleep-wake orientation, mobilization, communication, and individualized goal setting when the PICU team provides clear coaching and safeguards (23,28), as shown in Table 3.

Impacts on clinical and psychosocial outcomes

Physiological and psychological benefits for the critically ill child should be interpreted through the themes of comfort, communication, and rehabilitation rather than as uniformly proven effects. Family presence may provide emotional security in an unfamiliar environment, and caregiver participation in early mobility and communication protocols has been associated with perceived improvements in child mood and acceptance of rehabilitation activities (24). For children who are young, sedated, neurologically impaired, or unable to communicate, parents can also help clinicians interpret baseline behavior, discomfort, and individualized needs (29).

These potential benefits depend on careful implementation. Family involvement should not be assumed to reduce fear or pain in all situations; rather, it may help when families are coached, the child’s preferences are considered, and care tasks are matched to clinical safety and developmental needs (24,29).

Evidence for direct physiological benefit remains limited, but rehabilitation-focused studies support the value of caregiver partnership in early mobility, functional recovery, and individualized rehabilitation planning (24,29). Therefore, FIC should be framed as a supportive component of recovery rather than as an independent therapeutic intervention with definitive physiologic effects.

For families, FIC may reduce helplessness by giving parents a defined role and improving access to information. Mixed-methods evidence suggests that partnership-focused interventions in pediatric and neonatal intensive care can improve family experience and may reduce stress or anxiety, although outcomes vary across settings and study designs (15,30,31).

Psychosocial support is strongest when bedside participation is paired with social work, psychological support, and structured communication. These services can help families understand care plans, identify coping resources, address practical barriers, and participate more confidently in discussions with the medical team (13,32).

For children with chronic or neurologically complex conditions, family functioning and long-term follow-up needs may be especially important. Multidisciplinary follow-up models that include neuropsychology, rehabilitation, and family support can help translate PICU recovery goals into home and community contexts (32).

Challenges and barriers to implementation

Systemic, environmental, and resource constraints

Implementation barriers occur at system, team, and family levels. At the system level, PICU complexity, infection-control requirements, limited physical space, and restrictive visitation policies may reduce family presence and participation (33,34). These constraints can be particularly burdensome for families with multiple caregiving responsibilities or long hospitalizations (35).

At the institutional level, lack of protocols, staffing constraints, and workflow concerns may make clinicians hesitant to invite families into care activities (36). Practical implementation therefore requires clear role definitions, staff education, escalation procedures, and policies that balance family participation with patient safety.

Environmental and resource barriers should be addressed through flexible visitation policies, family-accommodating spaces, interpreters, written education materials, and institutional guidance on which bedside activities are appropriate under different clinical conditions (34-36).

Cultural, cognitive, and communication disparities

Communication, language, and cultural barriers often overlap. Families may struggle to understand technical terminology, prognostic uncertainty, or rapidly changing plans, especially when interpretation is required or when cultural norms make it difficult to question clinicians (34,37). Health-literacy-sensitive communication and culturally responsive shared decision-making are therefore essential to equitable FIC implementation.

Clinician beliefs may also limit implementation. When families are viewed only as visitors or recipients of information, their experiential knowledge of the child’s baseline behavior and needs may be underused (38). Reflective practice and team training can help clinicians integrate family expertise while maintaining professional accountability and safety.

Family psychological distress can further reduce participation. Acute fear, uncertainty, low medical literacy, and concern about “doing something wrong” may lead parents to withdraw from bedside care unless staff provide clear permission, coaching, and emotional support (39,40).

Addressing these barriers requires a dual strategy: building staff competence in communication, cultural humility, and FCC, while empowering families through interpreters, repeated education, psychosocial support, and flexible participation options, as summarized in Table 4 (34,38).

The crucial role of the interdisciplinary team

Core medical and surgical team integration

PICU physicians and nurses are the core facilitators of FIC because they conduct daily communication, provide bedside education, identify safe opportunities for participation, and coordinate family meetings. Their role is not limited to technical care; they also translate clinical uncertainty, explain care goals, and support shared decision-making (41).

Specialty clinicians, including neurologists, rehabilitation physicians, cardiology teams, surgical teams, and other consultants, contribute when they clarify disease-specific prognosis, rehabilitation needs, procedure-related decisions, or transition planning. Their contribution is most useful when coordinated through the PICU team so that families receive consistent information rather than fragmented recommendations (41-43).

For surgical or procedure-based care, family integration should include clear pre-procedure explanation, discussion of family values and expectations, transparent postoperative updates, and practical preparation for rehabilitation or home care (42,43). This content is integrated here rather than treated as a separate professional domain because the underlying FIC mechanism is the same: coordinated communication and partnership across the care continuum, as shown in Figure 2.

Figure 2 Interdisciplinary support ecosystem. PICU, pediatric intensive care unit.

Psychosocial, palliative, and spiritual support services

Social workers, psychologists, chaplains or spiritual care providers, and palliative care teams support FIC by helping families participate meaningfully rather than only by providing general emotional support. Social workers can identify financial, housing, employment, and caregiving barriers that limit bedside presence; psychologists can address acute distress and coping; and spiritual care providers can help families articulate values, hopes, and sources of meaning during crisis (42,44-46).

Palliative care communication should be framed as a support for FCC/FIC. These teams help clarify goals of care, manage distressing symptoms, facilitate values-based decision-making, and support families during uncertainty, treatment limitation, or end-of-life care (25-27,45,47,48). Integrating palliative support early can improve the quality of communication without replacing the primary PICU team.

Regular interdisciplinary family meetings provide a practical mechanism for aligning information across professions and enabling family participation. When structured around the child’s current status, family questions, values, care goals, and next steps, these meetings can reduce contradictory messaging and support shared understanding (42,43).

Future directions and perspectives

Evidence-based guidelines, tools, education, and long-term support

Future work should first clarify definitions and implementation standards. Pediatric critical care guidelines should specify how families can be safely involved in communication, comfort measures, delirium prevention, rehabilitation, discharge preparation, and long-term follow-up (49,50). Existing pediatric guidelines in related areas demonstrate the value of shared decision-making and structured discharge planning, but family engagement remains inconsistently operationalized (49,50).

Evaluation tools also need clearer explanation and pediatric validation. For example, the I-DECIDED tool is a structured assessment and decision-support approach for peripheral intravenous catheter care; its pediatric evaluation suggests that standardized prompts can improve assessment, documentation, and communication around device care (51). Although it is not an FIC tool per se, it illustrates how structured bedside tools may create opportunities for patient and family engagement when families are invited to observe, ask questions, and participate in care decisions.

Research should examine which FIC components work best for different ages, diagnoses, illness trajectories, and sociocultural contexts. Rather than extrapolating broadly from narrow populations, future studies should use pragmatic designs, mixed methods, and patient- and family-prioritized outcomes to evaluate implementation feasibility and long-term impact (18,45).

Policy, education, culture, and digital support

Implementation also requires policy and educational change. Institutions should review visitation, sibling access, family meeting, interpreter, and discharge policies to ensure that family participation is supported rather than left to individual clinician preference (52). These policies should define flexible options while preserving patient safety and infection-control requirements.

Staff education should focus on practical FIC skills, including how to invite family participation, explain uncertainty, conduct culturally responsive conversations, and coach families through safe bedside tasks. Communication during rounds, open visitation, and guided participation in care are recurring strategies associated with greater family satisfaction and lower distress, but they require staff preparation and leadership support (53).

Organizational culture is equally important. Leadership support, interprofessional case discussions, and nursing leadership can help teams move from clinician-controlled communication toward partnership-based care (54,55). Training should therefore address both individual communication behaviors and system-level norms that determine whether FIC is implemented consistently.

Digital tools and long-term support models

Digital tools and long-term support models should be discussed as implementation supports, not as evidence of direct FIC efficacy. Telehealth, shared data platforms, and ICU dashboards may streamline clinical workflows or improve information sharing, but future studies must clarify whether these tools actually increase family understanding, participation, and continuity of care after discharge (56,57).

Post-PICU follow-up programs should integrate rehabilitation, psychology, social work, specialty care, and family support to address functional recovery and family needs beyond discharge (32,45). This topic is better framed as a future research and implementation priority than as an established intervention with proven effects on all PICS-p outcomes.

Future studies should also test co-designed psychosocial interventions for children and parents, including communication interventions, peer or family support, psychological care, and spiritual support when desired by families (56,57). These strategies should be evaluated with outcomes that matter to families, such as preparedness, trust, symptom understanding, quality of life, family functioning, and child recovery.

Conclusions

FIC is a promising approach for improving partnership, communication, and family support in pediatric critical care. Current evidence suggests potential benefits for child comfort, parental confidence, shared decision-making, rehabilitation participation, and family experience; however, the strength of evidence varies across outcomes and does not yet establish definitive benefit for all domains of PICS-p. The value of FIC should therefore be presented as clinically important and conceptually well supported, but still requiring stronger pediatric-specific evaluation.

Implementation remains challenging because of resource constraints, safety concerns, restrictive policies, clinician workload, communication barriers, and family psychological distress. Addressing these barriers will require institutional policies, staff training, interpreter access, structured family meetings, interdisciplinary collaboration, and a culture that recognizes families as partners while maintaining clinical safety.

Future research should prioritize clearer definitions, inclusive study designs, standardized implementation frameworks, and pragmatic outcomes that reflect both child and family priorities. Observational, qualitative, mixed-methods, quality-improvement, and pre-post studies should be considered alongside controlled trials because they capture important implementation realities in PICU care. Through this broader evidence base, FIC can be refined into a sustainable, context-sensitive model that supports critically ill children and their families across hospitalization, transition, and long-term recovery.

Acknowledgments

None.

Footnote

Reporting Checklist: The authors have completed the Narrative Review reporting checklist. Available at https://tp.amegroups.com/article/view/10.21037/tp-2026-0270/rc

Peer Review File: Available at https://tp.amegroups.com/article/view/10.21037/tp-2026-0270/prf

Funding: None.

Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at https://tp.amegroups.com/article/view/10.21037/tp-2026-0270/coif). The authors have no conflicts of interest to declare.

Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

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