title: What impact do hospital and unit-based rules have upon patient and family-centered care in the pediatric intensive care unit?
abstract: Patient and family-centered care (PFCC) is the foundation for pediatric healthcare. The existence of hospital rules can, however, impact the extent to which PFCC is delivered. This qualitative, grounded theory study identified the existence of explicit and implicit rules in a pediatric intensive care unit, all of which negatively affected the family's ability to receive care that was attentive to their needs. The rules also placed the registered nurse in the challenging position of serving as rule enforcer and facilitator of PFCC. Further work is needed to explore how to adapt the hospital environment to better meet families' needs.
authors.affiliation: University of California, San Francisco School of Nursing, San Francisco, CA. Electronic address: jennifer.baird@childrens.harvard.edu.
authors.forename: Jennifer
authors.initials: J
authors.lastname: Baird
authors.affiliation: University of Victoria School of Nursing, Victoria, BC, Canada.
authors.forename: Betty
authors.initials: B
authors.lastname: Davies
authors.affiliation: Children's National Medical Center, Washington, DC.
authors.forename: Pamela S
authors.initials: PS
authors.lastname: Hinds
authors.affiliation: Stanford University Pediatric Oncology, Palo Alto, CA.
authors.forename: Christina
authors.initials: C
authors.lastname: Baggott
authors.affiliation: University of California, San Francisco School of Nursing, San Francisco, CA.
authors.forename: Roberta S
authors.initials: RS
authors.lastname: Rehm
mesh_terms: D000293:Adolescent; D000328:Adult; D002648:Child; D002675:Child, Preschool; D002908:Chronic Disease / Q000628:therapy; D005260:Female; D062489:Health Impact Assessment; D006784:Hospitals, Teaching / Q000458:organization & administration; D006801:Humans; D007223:Infant; D015278:Intensive Care Units, Pediatric / Q000458:organization & administration*; D008134:Long-Term Care / Q000379:methods; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D017063:Outcome Assessment, Health Care; D018802:Patient-Centered Care / Q000458:organization & administration*; D011368:Professional-Family Relations; D036301:Qualitative Research; D018570:Risk Assessment; D012720:Severity of Illness Index
keywords: Children with complex chronic conditions; Patient and family-centered care; Pediatric intensive care unit