title: A content analysis from a US statewide survey of memorable healthcare decisions for individuals with intellectual disability.
abstract: BACKGROUND
  Little is known about surrogate healthcare decision-making for individuals with intellectual disability (ID). This study examined healthcare decision-making by residential-agency directors to learn their process and the extent to which the individual is included.
  
  
  METHODS
  Content analysis of qualitative data from a mailed survey of residential-agency directors in a large US northeastern state.
  
  
  RESULTS
  Narrative comments of 102 directors (65% of respondents) are reported. Three themes emerged: (a) Identifying someone else's "best interest" is challenging; (b) Perceptions of the healthcare community, especially related to quality of life, can influence care provided; and (c) Surrogate decision-making is a team effort.
  
  
  CONCLUSIONS
  With knowledge of how decisions are made, the healthcare community can better interact with the complex array of service agencies and persons who determine care for this vulnerable population.
authors.affiliation: College of Nursing and Health Professions, Drexel University, Mail Stop 501, 245 North 15th Street, Philadelphia, PA19102-1101, USA. kmf43@drexel.edu
authors.forename: Kathleen M
authors.initials: KM
authors.lastname: Fisher
authors.forename: Michael J
authors.initials: MJ
authors.lastname: Green
authors.forename: Fredrick K
authors.initials: FK
authors.lastname: Orkin
authors.forename: Vernon M
authors.initials: VM
authors.lastname: Chinchilli
mesh_terms: D000328:Adult; D001291:Attitude of Health Personnel; D003657:Decision Making; D005260:Female; D006270:Health Facility Administrators / Q000523:psychology*; D006801:Humans; D008607:Intellectual Disability / Q000628:therapy*; D008297:Male; D008875:Middle Aged; D010348:Patient Care Team; D011787:Quality of Health Care; D012112:Residential Facilities / Q000458:organization & administration*; D011795:Surveys and Questionnaires; D014481:United States
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