title: What the patients and parents do not tell you-recollections from families following external LeFort III midface distraction.
abstract: OBJECTIVE
  The purpose of this study was to document the experience of patients and parents of patients who had recently undergone LeFort III midface distraction using an external halo-based device.
  
  
  METHODS
  Cross-sectional study.
  
  
  METHODS
  A craniofacial center in a pediatric tertiary care medical center.
  
  
  METHODS
  Eight children who had undergone midface distraction within 1 year of the interview and their caregivers.
  
  
  METHODS
  Semi-structured interview.
  
  
  METHODS
  Transcripts of the interviews were rendered anonymous and analyzed by our multi-disciplinary team. Consistent themes in the subjects' experience during and after midface distraction were identified.
  
  
  RESULTS
  (1) Family participation in the decision to undergo distraction and pre-operative preparation was recognized as valuable, but parents identified that there are inherent limitations; (2) home-care tasks seemed daunting pre-operatively but were easier than expected; (3) discomfort, sleeping, and interaction with peers were considered well accommodated, but feeding was challenging; (4) individualized pre-operative plans for community support was important; (5) parents and patients were impressed by the change in appearance, specifically in the peri-orbital region; (6) access to team members and to parents of patients who had participated in the distraction process was invaluable.
  
  
  CONCLUSIONS
  External midface distraction is a valuable clinical technique, but requires intensive preparation and support from a multi-disciplinary team. We provide suggestions for consideration by centers initiating and refining patient care plans for this surgery.
authors.affiliation: Children's Craniofacial Center, Seattle Children's Hospital, Seattle, Washington 98105, USA.
authors.forename: Richard A
authors.initials: RA
authors.lastname: Hopper
authors.forename: Cassandra
authors.initials: C
authors.lastname: Aspinall
authors.forename: Carrie
authors.initials: C
authors.lastname: Heike
authors.forename: Monica
authors.initials: M
authors.lastname: Andrews
authors.forename: Bay
authors.initials: B
authors.lastname: Sittler
authors.forename: Babette
authors.initials: B
authors.lastname: Saltzman
authors.forename: Marsha
authors.initials: M
authors.lastname: Ose
mesh_terms: D000203:Activities of Daily Living; D002648:Child; D002675:Child, Preschool; D019465:Craniofacial Abnormalities / Q000523:psychology / Q000601:surgery*; D004435:Eating; D005260:Female; D006801:Humans; D008297:Male; D019857:Osteogenesis, Distraction / Q000009:adverse effects / Q000295:instrumentation / Q000523:psychology; D019340:Osteotomy, Le Fort / Q000009:adverse effects; D010290:Parents / Q000523:psychology; D011369:Professional-Patient Relations; D002666:Psychology, Child