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An office or a bedroom? Challenges for family-centered care in the pediatric intensive care unit
Mary Ellen Macdonald1, Stephen Liben, Franco A Carnevale
1Division of Oral Health and Society, Faculty of Dentistry, McGill University, 3550 University Street, Suite 030, Montréal, QC H3A 2A7, Canada. mary.macdonald@mcgill.ca
Insights
Pediatric intensive care units (PICUs) often claim family-centered care, but this study found a gap between this model and daily practices. This disconnect can negatively impact family experiences during a child's hospitalization.
Area of Science:
- Pediatric Intensive Care
- Family-Centered Care
- Healthcare Ethnography
Background:
- Modern pediatric intensive care units (PICUs) aim to implement family-centered care.
- However, the actual prospective experiences of families within the PICU environment remain underexplored.
Purpose of the Study:
- To gain a deeper understanding of how families experience care when a child is hospitalized in a PICU.
- To identify discrepancies between the stated family-centered care model and actual clinical practices.
Main Methods:
- A 12-month prospective ethnographic study was conducted in a tertiary care hospital's PICU.
- Data collection involved participant-observation and interviews with 18 families and key hospital staff.
Main Results:
- A significant divergence was observed between the philosophy of family-centered care and the daily practices within the PICU.
- PICU protocols and routines often prioritized staff convenience over family needs, transforming parents into visitors and impacting comfort, privacy, and visitation.
Conclusions:
- The study highlights a gap between the ideal of family-centered care and the reality of PICU operations.
- Recommendations are discussed to bridge this divide and create a genuinely family-centered PICU environment.
Abstract:
Although the modern pediatric intensive care unit (PICU) has followed general pediatrics and adopted the family-centered care model, little is known about how families prospectively experience PICU care. The authors' goal was to better understand the experiences of families whose child was hospitalized in a PICU. They conducted a 12-month prospective ethnographic study in a PICU in a tertiary care hospital in a large North American urban center. Data were obtained via participant-observation and formal and informal interviews with 18 families and staff key informants. Findings revealed a disconnect between the espoused model of family-centered care and quotidian professional practices. This divergence emerged in the authors' analysis as a heuristic that contrasts a professional "office" to a sick child's "bedroom." PICU practices and protocols transformed the child into a patient and parents into visitors; issues such as noise, visitation, turf, and privacy could favor staff comfort and convenience over that of the child and family. The authors' discussion highlights suggestions to overcome this divergence in order to truly make the PICU family centered.
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