When Family-Centered Care Is Challenged by Infectious Disease: Pediatric Health Care Delivery During the SARS Outbreaks

Abstract

In this ethnographic study, the authors examined the experiences and perspectives of children hospitalized because of SARS (severe acute respiratory syndrome), their parents, and pediatric health care providers. The sample included 5 children, 10 parents, and 8 health care providers who were directly affected by SARS during the time of the outbreaks and extreme infection control procedures. The data analyses illuminated a range of perceived experiences for this triadic sample. Issues related to social isolation due to infection control precautions were predominant. Themes included emotional upheaval, communication challenges, and changes in parental and professional roles. These findings reveal the cogent effects of SARS on family-centered care. The notion of providing family-centered care within an environment plagued by an infectious outbreak suggests an ominously difficult task. Efforts must be made to optimize family-centered care despite obstacles. The authors suggest effective clinical approaches in the event of future outbreaks.