"We Aren't Meant to Go Through the Hardest Parts of Our Lives Alone": Family Experience With Restricted PICU Presence During the COVID-19 Pandemic

Laurie A Lee; Jennifer R Foster; Dejana Nikitovic; Daniel Garros; Molly J Ryan; Neda Moghadam; Corey Slumkoski; Martha Walls; Janet A Curran; Jamie A Seabrook; Stacy Burgess; Laura Betts; Amanda Barclay; Karen Choong; Patricia Fontela; Srinivas Murthy; Jessica Nicoll; Katie O'Hearn; Anupam Sehgal; Janice Tijssen

doi:10.1097/CCE.0000000000000989

"We Aren't Meant to Go Through the Hardest Parts of Our Lives Alone": Family Experience With Restricted PICU Presence During the COVID-19 Pandemic

Crit Care Explor. 2023 Oct 27;5(11):e0989. doi: 10.1097/CCE.0000000000000989. eCollection 2023 Nov.

Authors

Laurie A Lee^{1

2}, Jennifer R Foster^{3

4}, Dejana Nikitovic¹, Daniel Garros^{5

6}, Molly J Ryan³, Neda Moghadam⁷, Corey Slumkoski⁷, Martha Walls⁷, Janet A Curran^{8

9}, Jamie A Seabrook^{10

11

12

13

14}, Stacy Burgess⁸, Laura Betts³, Amanda Barclay^{15

16

17

18}, Karen Choong^{19

20}, Patricia Fontela²¹, Srinivas Murthy²², Jessica Nicoll²³, Katie O'Hearn²⁴, Anupam Sehgal²⁵, Janice Tijssen²⁶

Affiliations

¹ Department of Pediatrics, Cumming School of Medicine, University of Calgary, Calgary, AB, Canada.
² Faculty of Nursing, University of Calgary, Calgary, AB, Canada.
³ Department of Pediatric Critical Care, IWK Health, Halifax, NS, Canada.
⁴ Department of Critical Care, Dalhousie University, Halifax, NS, Canada.
⁵ Stollery Children's Hospital, Edmonton, AB, Canada.
⁶ Department of Pediatrics, Division of Critical Care Medicine, University of Alberta, Edmonton, AB, Canada.
⁷ Patient Partner, Department of Pediatric Critical Care, IWK Health, Halifax, NS, Canada.
⁸ IWK Health, Halifax, NS, Canada.
⁹ Dalhousie School of Nursing, Dalhousie University, Halifax, NS, Canada.
¹⁰ Department of Pediatrics, Western University, London, ON, Canada.
¹¹ Children's Health Research Institute, London, ON, Canada.
¹² Lawson Health Research Institute, London, ON, Canada.
¹³ School of Food and Nutritional Sciences, Brescia University College, London, BC, Canada.
¹⁴ Department of Epidemiology & Biostatistics, Western University, London, ON, Canada.
¹⁵ Department of Pediatrics, Faculty of Medicine, University of British Columbia, Vancouver, BC, Canada.
¹⁶ Pediatrics, University of Victoria, Victoria, BC, Canada.
¹⁷ Island Health, Vancouver, BC, Canada.
¹⁸ Victoria General Hospital, Victoria, BC, Canada.
¹⁹ Departments of Pediatrics and Critical Care, McMaster University, Hamilton, ON, Canada.
²⁰ McMaster Children's Hospital, Hamilton, ON, Canada.
²¹ Division of Pediatric Critical Care, Department of Pediatrics, McGill University, Montreal, QC, Canada.
²² Division of Critical Care, Department of Pediatrics, University of British Columbia, Vancouver, BC, Canada.
²³ Janeway Children's Health and Rehabilitation Centre, St. John's, NL, Canada.
²⁴ Children's Hospital of Eastern Ontario Research Institute, Ottawa, ON, Canada.
²⁵ Department of Pediatrics, Queen's University, Kingston Health Sciences Centre, Kingston, ON, Canada.
²⁶ Schulich School of Medicine and Dentistry, Western University, London, ON, Canada.

Abstract

Context: PICUs across Canada restricted family presence (RFP) in response to the COVID-19 pandemic from allowing two or more family members to often only one family member at the bedside. The objective of this study was to describe the experiences and impact of RFP on families of critically ill children to inform future policy and practice.

Hypothesis: RFP policies negatively impacted families of PICU patients and caused moral distress.

Methods and models: National, cross-sectional, online, self-administered survey. Family members of children admitted to a Canadian PICU between March 2020 and February 2021 were invited to complete the survey. RFP-attributable distress was measured with a modified distress thermometer (0-10). Closed-ended questions were reported with descriptive statistics and multivariable linear regression assessed factors associated with RFP-attributable distress. Open-ended questions were analyzed using inductive content analysis.

Results: Of 250 respondents who experienced RFP, 124 (49.6%) were restricted to one family member at the bedside. The median amount of distress that families attributed to RFP policies was 6 (range: 0-10). Families described isolation, removal of supports, and perception of trauma related to RFP. Most families (183, 73.2%) felt that policies were enforced in a way that made them feel valued by PICU clinicians, which was associated with less RFP-attributable distress. Differential impact was seen where families with lower household income indicated higher RFP-attributable distress score (2.35; 95% CI, 0.53-4.17; p = 0.03). Most respondents suggested that future policies should allow at least two family members at the bedside.

Interpretations and conclusions: Families of children admitted to PICUs during the COVID-19 pandemic described increased distress, trauma, and removal of supports due to RFP policies. Vulnerable families showed an increased odds of higher distress. Healthcare professionals played an important role in mitigating distress. Allowance of at least two family members at the bedside should be considered for future policy.

Keywords: COVID-19; family; intensive care units; organizational policy; pediatrics.