Navigator-Based Intervention to Support Communication in the Pediatric Intensive Care Unit

A Pilot Study

Kelly N. Michelson, MD, MPH; Elizabeth Charleston, BS; Danica Y. Aniciete, MS; Lauren R. Sorce, PhD, RN, CPNP-AC/PC; Patricia Fragen, BA; Stephen D. Persell, MD, MPH; Jody D. Ciolino, PhD; Marla L. Clayman, PhD, MPH; Karen Rychlik, MS; Virginia A. Jones, MS; Pamela Spadino, BA; Marcelo Malakooti, MD; Melanie Brown, MD; Douglas White, MD, MAS


Am J Crit Care. 2020;29(4):271-282. 

In This Article


In this pilot study, we found PICU Supports feasible to study and implement based on the reasonable enrollment rate, adequate survey completion rate at enrollment and PICU discharge, and high completion rate of key intervention components. Most parents perceived the intervention as beneficial. Health care team members and parents provided valuable suggestions for intervention refinement.

Parents consistently noted that PICU Supports improved the quality of communication in the PICU.

Few PICU-focused interventions like PICU Supports exist. Some programs have sought to improve daily PICU communication by enhancing parent engagement during daily rounds, ensuring daily parent updates from the health care team, or conducting daily review of patient goals.[36–38] Other programs have sought to improve parent psychosocial outcomes using a parent educational-behavior intervention or enhancing parent-nurse engagement.[9,10] One PICU initiated formal weekly discussions for patients with prolonged admissions to consider care goals and ethical issues.[39] Other adult ICU interventions focus efforts on patients facing end-of-life care issues.[40] PICU Supports differs in that it was designed specifically for the PICU, is relevant for virtually all PICU patients, and uses a multifaceted individualized approach intended to address many parent needs including communication, information, emotional, decision-making, and transitional or end-of-life care needs.

We identified 3 potential ways to improve the intervention. First, to enhance integration of the navigator with the health care team, we suggest including the navigator in daily psychosocial rounds (ie, rounds with social workers, chaplains, etc) and medical team patient rounds, and having the navigator document activities in the medical record. Second, some PICU Supports components may have been underused (eg, family meetings, communication log, diary, and question prompt list). Because these components are supported by recommendations and existing literature,[1,41,42] we suggest developing criteria to identify families who might benefit most from family meetings, implementing more frequent health care team education about the communication log, and having more regular parent reminders from the navigator about the diary and question prompt list. Third, limited parent availability affected how often the navigator met with parents. We attempted to mitigate this problem by maximizing the navigator's availability during weekdays, asking bedside nurses to contact the navigator when a parent was present, allowing the navigator to call parents (in lieu of in-person meetings), and having navigators identify preferable meeting times with parents. Other approaches include having an evening and/or weekend navigator and using electronic communication portals or telecommunication strategies to enhance parent interaction.

We experienced a lower-than-expected survey return rate. Although we do not know why some parents did not return surveys, study team members anecdotally reported that parents were often not available to receive and return the in-hospital surveys. Future studies should plan a robust approach to cohort retention. We suggest limiting the number of surveys, giving parents multiple options for completing surveys (eg, mail/email, in-person, and phone), interacting with parents multiple times during the PICU stay to maintain rapport, reminding parents at PICU discharge about the follow-up survey, and planning several approaches for contacting families after discharge (eg, phone, email, and traditional mail).[43] Additionally, we could not invite almost 45% of eligible parents to participate, largely because parents were not available during weekday hours. Expanding participant recruitment to evenings and weekends and allowing for phone consent might enhance study participation.

This study has some limitations. Given that it was a pilot study without a control arm, designed to assess feasibility and refine procedures,[44,45] we could not establish the impact of the intervention on parent or patient outcomes. With only a single site, we could not assess the impact of institutional factors on study or intervention implementation. Similarly, we could not assess "navigator effects," including the effect of having a navigator with counseling expertise rather than medical training, such as a nurse. Also, this work does not consider how other institutions might replicate the navigator role. We further acknowledge that parents may have provided socially desirable answers, biasing parent feedback. Finally, eligible but unenrolled parents might have reacted differently, positively or negatively, to the intervention. A larger study powered to assess objective outcome measures is needed to explore all these issues.

The overwhelmingly positive and sustained perception of parents about PICU Supports suggests the need to study this intervention further. The success of similar interventions in adult ICUs further supports this need.[6,46] We have an ongoing multisite randomized clinical trial (funded by the Patient-Centered Outcomes Research Institute) to assess the impact of PICU Supports on parent-reported outcomes measured 3 to 5 weeks after PICU discharge, including satisfaction with decision-making and PICU care, parental psychological morbidity (symptoms of anxiety, depression, and posttraumatic stress), global health, decision regret, and team collaboration. These data support the need for that larger study.