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Challenges of Families of Patients Hospitalized in the PICU: A Preplanned Secondary Analysis From the Navigate
Julia B Tager1, Jessica T Hinojosa2, Brynn M LiaBraaten3
1Department of Psychology, University of Wisconsin-Milwaukee, Milwaukee, WI.
Insights
Parents of children in the pediatric intensive care unit (PICU) face significant challenges, including home life, hospitalization, and diagnosis distress. Improving provider-family communication is crucial for reducing parental stress during PICU admissions.
Area of Science:
- Pediatric critical care medicine
- Family-centered care
- Qualitative health research
Background:
- Parents of children admitted to the pediatric intensive care unit (PICU) experience significant stress.
- Understanding these parental challenges is vital for improving family support and care quality.
- Family navigators play a key role in identifying and addressing parental needs during PICU admissions.
Purpose of the Study:
- To describe the challenges encountered by parents of children hospitalized in the PICU, as reported by family navigators.
- To identify common stressors and communication difficulties faced by families during a PICU stay.
- To gather insights for improving support interventions for PICU families.
Main Methods:
- Secondary analysis of qualitative data from the Navigate randomized controlled trial (RCT).
- Inductive qualitative coding of open-response data from 338 family navigator encounters.
- Data collected from two university-affiliated PICUs in the Midwestern United States between 2015-2017.
Main Results:
- The most common parental challenges were related to home life (45.2%), hospitalization (29.0%), and diagnosis distress (17.2%).
- Communication challenges, including lack of information and team communication issues, affected 8% of families.
- Parents often experienced co-occurring stressors, highlighting the complexity of their needs during PICU admission.
Conclusions:
- Parents of PICU patients face multifaceted stressors, encompassing both hospital-related and external factors.
- Communication breakdowns between healthcare providers and families contribute to parental distress.
- Future interventions should focus on enhancing provider-family communication and mitigating non-hospital stressors for PICU families.
Objectives:
To describe challenges experienced by parents of children hospitalized in the PICU during PICU admission as reported by family navigators.
Design:
A preplanned secondary analysis of open-response data coded via inductive qualitative approach from the Navigate randomized controlled trial (RCT) dataset (ID NCT02333396).
Setting:
Two university-affiliated PICUs in the Midwestern United States as part of an RCT.
Patients:
Two hundred twenty-four parents of 190 PICU patients.
Interventions:
In 2015-2017, trained family navigators assessed and addressed parent needs, offered weekly family meetings, and provided post-PICU discharge parent check-ins as part of a study investigating the effectiveness of a communication support intervention ("PICU Supports").
Measurements And Main Results:
We analyzed qualitative data recorded by family navigators weekly across 338 encounters. Navigators described families' "biggest challenge," "communication challenges," and ways the team could better support the family. We used an inductive qualitative coding approach and a modified member-checking exercise. The most common difficulties included home life , hospitalization , and diagnosis distress (45.2%, 29.0%, and 17.2% of families, respectively). Navigators often identified that parents had co-occurring challenges. Communication was identified as a "biggest challenge" for 8% of families. Communication challenges included lack of information, team communication , and communication quality (7.0%, 4.8%, and 4.8% of families, respectively). Suggestions for improving care included better medical communication, listening, rapport, and resources.
Conclusions:
This study describes families' experiences and challenges assessed throughout the PICU stay. Family navigators reported families frequently experience stressors both internal and external to the hospital environment, and communication challenges between families and providers may be additional sources of distress. Further research should develop and assess interventions aimed at improving provider-family communication and reducing stressors outside the hospitalization itself, such as home life difficulties.
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