Family Members' Perceptions of Their Psychological Responses One Year Following Pediatric Intensive Care Unit (PICU) Hospitalization: Qualitative Findings From the Caring Intensively Study.

Janet E Rennick,Dale M Stack,Alyssa M Knox,Michelle Ho,Marsha Campbell-Yeo,Stephanie C Treherne,Robyn Stremler,Hailey Fudge,Lyndsey Mcrae,Christine T Chambers,Karen Dryden-Palmer,Geoffrey Dougherty

doi:10.3389/fped.2021.724155

Abstract

Introduction: PICU hospitalization can have a profound impact on child survivors and their families. There is limited research on children's long-term recovery within the context of the family following critical illness. This study aimed to explore children's and parents' perceptions of long-term psychological and behavioral responses within the context of the family one year following PICU hospitalization.Materials and Methods: Caring Intensively is a mixed methods multi-site prospective cohort study that aims to examine children's psychological and behavioral responses over a 3-year period following PICU hospitalization. In this study, part of the qualitative arm of Caring Intensively, an interpretive descriptive design was used to explore children's recovery one year post-discharge. Purposive sampling was used to select 17 families, including 16 mothers, 6 fathers, and 9 children. Semi-structured, audio-recorded interviews were conducted. Data were analyzed iteratively using the constant comparison method.Results: Families described efforts to readapt to routine life and find a new normal following PICU hospitalization. Finding a New Normal consisted of four major themes: (1) Processing PICU Reminders and Memories, (2) Changing Perceptions of Health and Illness, (3) We Are Not the Same, and (4) Altered Relationships. Participants described significant emotional and behavioral changes during the year following discharge. The psychological impact of individual family members' experiences led to changes in their sense of self, which affected family dynamics. PICU memories and reminders impacted participants' perceptions of childhood health and illness and resulted in increased vigilance. Parents and siblings demonstrated increased concern for the child survivor's health, and the experience of long absences and new or altered caregiving roles resulted in changes in relationships and family dynamics.Conclusion: PICU hospitalization impacted the psychological well-being of all family members as they sought to re-establish a sense of normalcy one year following discharge. Parent and child experiences and responses were closely interconnected. Findings highlight the importance of increased follow-up care aimed at supporting the family's psychological recovery.

Highlights

pediatric intensive care unit (PICU) hospitalization can have a profound impact on child survivors and their families
The current study focused on interview data collected at one year following PICU hospitalization from families enrolled in the qualitative arm of Caring Intensively
Seven families were unable to schedule an interview within the required time period; two families did not Households One-parent household Two-parent household Household members Parent age Child age at enrolment Parent highest level of education High school College University Parent employed Family member(s) participating in interview Mother and child Both parents and child Mother only Father only Both parents only Child PICU primary diagnostic category Respiratory Cardiology Neurology Trauma Oncology Infectious disease Nephrology Child PICU length of stay Child total hospital LOS Invasive procedure score [36] Pediatric risk of mortality score (PRISM III) [37] Recruitment site MCH SickKids IWK

Summary

Introduction

PICU hospitalization can have a profound impact on child survivors and their families. The experience of critical illness can have profound and lasting impacts on children’s and family members’ psychological health and wellbeing [4,5,6,7,8,9]. Children report changes in self-esteem and sense of self, increased anxiety, sleep disturbances, medical fears, and changes in friendships and social identity [14, 17, 18] Children describe their critical illness experiences as significant and challenging, and report a sense of disruption in their lives as they cope with exposure to death and dying during PICU hospitalization, and deal with changes in identity and social relationships after discharge [18, 19]

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