PICU Supports: Intervention for PICU Parents

Parents of children admitted to the pediatric intensive care unit (PICU) often face difficult decisions. Research demonstrates challenges with communication in the PICU which could impact decision making. We brought together a multi-stakeholder group of parents and healthcare professionals to develop a navigator-based intervention program called PICU Supports. Our hope is that this program, PICU Supports, will improve communication, decision making, and the overall experience for parents of critically ill children.

This work is supported through a Patient-Centered Outcomes Research Institute (PCORI) Program Award (CD1304-6449).

PICU Supports aims to provide the following types of support to parents of patients in the PICU:
  • Communication (between healthcare team members and parents/families as well as among healthcare team members)
  • Emotional
  • Decision making
  • Transitional (i.e., discharge transitions to a non-PICU hospital bed, a long term care facility or home)
  • Information

Support is accomplished by navigator engagement with parents and healthcare team members, and the guided use of navigator-supported ancillary tools provided to parents and health team members (HTMs) as needed. PICU Supports uses a predefined framework of activities and tools to provide individualized support directed by the needs of the parent and the patient’s situation.

Framework of Activities & Tools

 (Click to expand)

 

Navigator Activities & Descriptions

The table below lists the navigator activities and provides more detailed descriptions.

​Navigator Activity Description​
Initial visit with members of the healthcare team​
  • ​Elicits team perception of the patient’s clinical situation and parents' needs
  • Provide relevant feedback to healthcare team after meeting the family
Initial visit with the parents​
  • ​Explain the Navigator’s role and the components of PICU Supports
  • Begin to establish a relationship/rapport
  • Provide emotional support and empathy
  • Elicit parents' understanding of their child’s medical situation (diagnosis, prognosis, treatment plan).
  • Elicit family’s questions and concerns
  • Understand the patient as a person
  • Orient the parents to the PICU
  • Plan for next steps
Weekday visits with members of the healthcare team​
  • ​Elicits team perception of the patients' clinical situation and parent’s needs
  • Inquire about how the Navigator could help the healthcare team during visits with the parents
  • Give any feedback from visits with parents
Weekday visits with parents​
  • ​Provide emotional support
  • Assess parents' understanding of the patient’s medical situation
  • Elicit and attend to concerns/questions/practical needs
  • Assess communication between family and healthcare team and assist as needed
  • Utilize ancillary tools as needed by the parents
Coordination of family meetings​
  • ​Meet with parents before the family meeting
    • Identify topic areas and questions of interest to the parents (utilize question prompt list if needed)
    • Determine who the parents would like in attendance at the meeting
  • Meet with the healthcare team before the meeting
    • Identify clinician goals for the meeting
    • Inform the healthcare team about the parents’ goals/questions
    • Identify a conference leader
  • Participate in family meeting
    • Provide emotional support to parents
    • Help parents ask questions/encourage participation
    • Listen for and address misunderstandings
    • Ensure discussion of plan for next steps
    • Keep notes for the parents
  • Meet with parents after the meeting
    • Provide emotional support and express empathy
    • Help parents synthesize key information from the clinician
    • Elicit concerns and questions
    • Listen for key misunderstandings
    • Identify persistent or new questions
    • Give parents written notes
  • Meet with healthcare team after the meeting
    • Provide update about what happened when talking with the parents after the meeting
    • Inquire about how the Navigator can help the healthcare team during visits with the parent(s)
    • Plan for next meeting
Support for transitions out of the PICU​
  • ​For dying patients, utilize the end-of-life care checklist
  • For patients being transferred to a non-PICU bed or being discharged to home or another facility
    • Prepare parents for their next situation
    • Ensure parents’ understanding about medical care and follow up once leaving the PICU
    • Facilitate communication with the next healthcare team or non-PICU care providers about relevant issues to the parents
    • Provide parents with relevant informational resources and/or education materials
Post-PICU discharge check in​
  • ​For patients transferred to a non-PICU bed “check-in” with the parents in person
  • For patients discharged to home or a chronic care facility or for patients who have died, “check-in” with parents via the phone
  • Provide emotional support
  • Elicit and attend to concerns/questions/practical needs
  • Inform the new healthcare team (if still an inpatient) of ongoing parental concerns and goals
  • Provide follow-up to outpatient healthcare team (e.g. primary medical physician or subspecialty physician) when appropriate
 

Ancillary Tools & Descriptions

The table below lists the ancillary tools and provides more detailed descriptions.
Ancillary Tools Description
​PICU Handbook ​A book (written by our Parent Advisors, Healthcare Team Member Advisors and Research Advisors) with information about: how the PICU runs; medical terms, machines and procedures; and how parents can support themselves and their family while their child is in the PICU.
​Diary ​A place for parents to keep a diary of events and goals for their child.
​Question prompt list ​A list of questions covering issues relevant to parents of children in the PICU. The list is meant to help parents think about questions they might want ask the healthcare team.
​Provider information sheet ​Written information, compiled by the Navigator and given to healthcare team members, about the parents’ psychosocial issues, concerns, needs, or goals.
​Bedside communication log ​A log where Healthcare Team Members (other than PICU physicians, nurses and advanced practice nurses) write their name and service so parents know which Healthcare Team Members have visited.
​End-of-life care checklist ​A list of activities or options that should be offered to families of dying children that the Navigator ensures are addressed.
​Bereavement packet ​A packet of written information to support parental and family bereavement for those whose child dies.
​Ancillary information ​Additional informational resources (e.g. websites, written materials) relevant to the patient’s medical situation.
 
Visit our Ancilllary Tools page to learn more about the tools and download the handout.