A content analysis from a US statewide survey of memorable healthcare decisions for individuals with intellectual disability.
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.
Fisher
Kathleen M
KM
College of Nursing and Health Professions, Drexel University, Mail Stop 501, 245 North 15th Street, Philadelphia, PA19102-1101, USA. kmf43@drexel.edu
Green
Michael J
MJ
Orkin
Fredrick K
FK
Chinchilli
Vernon M
VM
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
Camb Q Healthc Ethics. 2008 Spring;17(2):239-46
18312739
J Clin Nurs. 2007 Sep;16(9):1678-86
17459128
Evid Based Nurs. 2003 Apr;6(2):36-40
12710415
West J Med. 2002 Mar;176(2):127-9
11897739
Ment Retard. 2003 Apr;41(2):78-87
12622524
Am J Bioeth. 2004 Summer;4(3):44-9
16192138
Am J Health Promot. 2006 Sep-Oct;21(1):2-12
16977907
Ment Retard. 2006 Aug;44(4):272-82
16834464
Psychol Med. 2000 Mar;30(2):295-306
10824650
J Clin Epidemiol. 1997 Oct;50(10):1129-36
9368521
Am J Intellect Dev Disabil. 2009 Nov;114(6):401-10
19792056
Public Health Rep. 2004 Jul-Aug;119(4):401-8
15219797