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.

Method 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.

Keywords:

• surrogate healthcare decision-making
• intellectual disability
• healthcare decision-making
• qualitative methods
• content analysis