title: Pediatric advance directives: parents' knowledge, experience, and preferences.
abstract: OBJECTIVE
  To explore parents' and caregivers' experience, knowledge, and preferences regarding advance directives (ADs) for children who have chronic illness.
  
  
  METHODS
  We conducted a prospective, cross-sectional survey of parents and caregivers of children who have chronic illness. During ambulatory medical visits, participants were asked about previous AD experience and knowledge, future preferences regarding AD discussions, their child's past and current health status, and family demographics.
  
  
  RESULTS
  Among 307 participants surveyed, previous AD experience was low, with 117 (38.1%) having heard of an AD, 54 (17.6%) having discussed one, and 77 (25.1%) having known someone who had an AD. Furthermore, 27 (8.8%) participants had an AD or living will of their own, and 8 (2.6%) reported that their chronically ill child had an AD. Previous AD knowledge was significantly more likely among parents and caregivers who had a college degree than those who did not have a high school diploma, yet significantly less likely among primarily Spanish-speaking parents and caregivers than those primarily English-speaking. Interest in creating an AD for the child was reported by 151 (49.2%) participants, and was significantly more likely among families who had more frequent emergency department visits over the previous year.
  
  
  CONCLUSIONS
  The limited AD experience and knowledge of parents and caregivers of children who have chronic illness and their interest in creating an AD suggest an unmet need among families of children who have chronic illness, and an opportunity to enhance communication between families and medical teams regarding ADs and end-of-life care.
authors.affiliation: Division of Emergency and Transport Medicine, Children's Hospital Los Angeles, Los Angeles, California; andDepartment of Pediatrics, Keck School of Medicine of the University of Southern California, Los Angeles, California dliberman@chla.usc.edu.
authors.forename: Danica B
authors.initials: DB
authors.lastname: Liberman
authors.affiliation: Division of Emergency and Transport Medicine, Children's Hospital Los Angeles, Los Angeles, California; and.
authors.forename: Phung K
authors.initials: PK
authors.lastname: Pham
authors.affiliation: Division of Emergency and Transport Medicine, Children's Hospital Los Angeles, Los Angeles, California; andDepartment of Pediatrics, Keck School of Medicine of the University of Southern California, Los Angeles, California.
authors.forename: Alan L
authors.initials: AL
authors.lastname: Nager
mesh_terms: D000293:Adolescent; D000328:Adult; D016223:Advance Directives / Q000523:psychology; D001290:Attitude; D001294:Attitude to Health; D002648:Child; D002675:Child, Preschool; D002908:Chronic Disease; D003430:Cross-Sectional Studies; D005260:Female; D006301:Health Services Needs and Demand; D006630:Hispanic or Latino / Q000706:statistics & numerical data; D006801:Humans; D007223:Infant; D016015:Logistic Models; D008297:Male; D010166:Palliative Care; D010290:Parents / Q000523:psychology; D011446:Prospective Studies; D012959:Socioeconomic Factors
keywords: advance care planning; decision-making; end of life; palliative care; special-needs children