Using focus groups to study proxy healthcare decision making for those with intellectual disability in the United States

Kathleen M. Fisher, Fredrick K. Orkin, Michael Green

Research output: Contribution to journalArticle


Background: Individuals with intellectual disability (ID) often rely on others for help with healthcare decision making. The goal of this study was to understand the process and challenges faced by proxy decision makers in the community and validate previous research findings. Method: A qualitative exploratory design using four focus groups with 18 community agency directors across one Mid-Atlantic state. Discussions were recorded, transcribed, and systematically coded for themes. Results: Four fundamental themes that include global concerns related to this vulnerable population were identified and found to influence proxy decision making. Decisions made by proxies that related to two major areas of concern - end-of-life decision making and access to health care services - were further identified. Conclusions: When caring for a person with ID, a proxy decision maker evaluates many variables that are both internal and external to the individual and residential agency, consults with a number of people who impact the health and safety of the individual, and is impacted by a societal stigma and general knowledge gap associated with the diagnosis of ID.

Original languageEnglish (US)
JournalInternational Journal of Nursing in Intellectual and Developmental Disabilities
Issue number1
Publication statusPublished - Dec 1 2011


All Science Journal Classification (ASJC) codes

  • Phychiatric Mental Health

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