title: Parent and provider perspectives on procedural care for children with autism spectrum disorders.
abstract: OBJECTIVE
  Children with autism spectrum disorders (CWASDs) have more difficulty tolerating hospital procedures than many other children. The aim of this study was to identify parent and provider perspectives on barriers and facilitators to procedural care for CWASDs.
  
  
  METHODS
  Semistructured interviews were conducted with medical staff and parents of CWASDs. Those parents whose child with autism required a procedure in a tertiary care sedation unit and those whose child was enrolled in autismMatch (a research registry for individuals with autism) were recruited. Staff providing direct patient care in the tertiary care sedation unit were recruited. Participants were asked open-ended questions about factors contributing to or interfering with successful completion of medical procedures for CWASDs. Interviews were audio-recorded, transcribed verbatim, coded, and analyzed using modified grounded theory techniques.
  
  
  RESULTS
  Twenty mothers and 20 medical staff members were interviewed. Participants described 2 domains essential to care of CWASDs but in which barriers existed: (1) productive interactions between providers and families, largely dependent on advanced preparation and (2) modifications to healthcare organization and delivery in the areas of patient flow and clinical environment. Individualized care is essential to quality care in both domains.
  
  
  CONCLUSIONS
  Children with autism spectrum disorders require individualized interventions to maximize the quality of procedural care. However, many hospitals and providers are not sufficiently equipped to accommodate these children's needs. This study suggests that targeted improvements in preparation and communication between providers and families as well as modifications in patient flow and clinical environments have the potential to improve the quality and successful completion of procedures.
authors.affiliation: *Department of Child Development, The Children's Hospital of Philadelphia, Philadelphia, PA; †The Permanente Medical Group, Oakland, CA; ‡Kaiser Roseville Medical Center, Roseville, CA; §Department of Emergency Medicine, The Children's Hospital of Philadelphia, Philadelphia, PA; ‖Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA; ¶Department of Family Medicine and Community Health, University of Pennsylvania, Philadelphia, PA; **Center for Public Health Initiatives, University of Pennsylvania, Philadelphia, PA; ††Leonard Davis Institute of Health Economics, University of Pennsylvania, Philadelphia, PA; ‡‡Center for Autism Research, Philadelphia, PA.
authors.forename: Meghan N
authors.initials: MN
authors.lastname: Davignon
authors.forename: Eron
authors.initials: E
authors.lastname: Friedlaender
authors.forename: Peter F
authors.initials: PF
authors.lastname: Cronholm
authors.forename: Breah
authors.initials: B
authors.lastname: Paciotti
authors.forename: Susan E
authors.initials: SE
authors.lastname: Levy
mesh_terms: D000293:Adolescent; D000328:Adult; D002648:Child; D002659:Child Development Disorders, Pervasive / Q000628:therapy*; D002675:Child, Preschool; D016292:Procedural Sedation / Q000379:methods*; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008505:Medical Staff, Hospital / Q000523:psychology*; D008875:Middle Aged; D010290:Parents / Q000523:psychology*