Outcomes associated with family presence at the bedside of critically ill children in the pediatric intensive care unit: a scoping review

Objective: The objective of this review is to identify the outcomes of family presence in pediatric intensive care units (PICUs) that have been studied and reported in the literature. Introduction: PICU admission can be traumatic for children and their families. While family presence at the patient bedside is recommended to support family participation and engagement in care and is supported in recent family-centered care guidelines, it is not consistently optimized. To guide family presence research, a scoping review is needed to identify outcomes associated with family presence. Inclusion criteria: This review included quantitative, qualitative, and mixed methods studies published from 1960 to 2022 in any language that reported outcomes of family presence at the bedside in the PICU for patients, their family members, and PICU health care professionals (HCPs). Methods: Following JBI methodology for scoping reviews, we searched MEDLINE (Ovid), PsycINFO (EBSCOhost), CINAHL (EBSCOhost), Embase, as well as 16 sources of gray literature for studies that addressed outcomes of family presence at the bedside in the PICU as they relate to the key players. Two independent reviewers screened titles and abstracts, followed by full texts of selected records according to the inclusion criteria. A priori, we identified categories of outcomes (biologic, psychologic, social, caring behavior) and key groups (HCPs, patients, families) to which the outcomes may apply. Data were extracted by 2 independent reviewers using a data extraction tool developed by the study team. Data were presented in tabular format to address findings related to the review objectives. Results: We identified 12,411 records through database searches, backward reference chaining, and gray literature searching. We removed 3012 duplicates, excluded 9244 records at the title and abstract review, and excluded 92 reports after full-text review. We extracted data from 62 reports of which 12 were mixed methods, 25 were quantitative, and 25 were qualitative spanning from 1982 to 2022. Of 46 unique outcomes, 39 reports addressed 28 outcomes for family members (psychologic n=13, social n=8, biologic n=5, caring behavior n=2; most common was stress, n=11 reports). Twenty reports addressed 16 outcomes for patients (psychologic n=7, social n=0, biologic n=6, caring behavior n=2, and other outcomes n=1; most common was out-of-bed mobilization, n=4 reports). Eleven reports addressed 9 outcomes for HCPs (psychologic n=3, social n=2, biologic n=0, caring behavior n=3, and other outcomes n=1; most common was procedural performance, n=3). The most frequently studied biologic outcome was sleep (n=7 reports; family members n=6, patients n=1), psychologic outcome was stress (n=13 reports; family members n=11, HCPs n= 2), social outcomes were role changes (n=4 reports; family members n=3, HCPs n=1) and financial challenges (n=4 reports for family members), and caring behavior outcome was out-of-bed mobility (n=4 reports for patients). Conclusions: A relatively large, heterogenous body of literature addresses biologic, psychologic, social, and caring behavior outcomes for family members, patients, and HCPs. The review highlights the heterogeneity of available data and identifies a need for a concerted analysis. Important gaps remain, including social and longer-term mental health outcomes for patients, outcomes for siblings, and infection transmission for all key groups.