Survey to Determine Incarcerated Persons' Views on Surrogate Decision Making

Overview

Background: About 180,000 of the people in US prisons are over 55 years old. Aging people often cannot make medical decisions on their own. People who cannot make their own decisions must rely on a "surrogate." A surrogate is someone who helps the person's doctor make decisions for them. Researchers want to conduct a survey to ask people in prison who they would like to be their surrogates. But first, they need to find out if their survey questions are clear and easy to understand. Objective: To get imprisoned people's feedback on survey questions about surrogate decision making. Eligibility: People currently imprisoned in a US facility with access to Edovo. They must be able to read and write in English. Design: Participants will answer 26 survey questions. The questions will be on the Edovo Learn software platform. After each question, they will be asked: "Was this question clear? If not, please explain in the box below what you found unclear. Also, if you have any suggestions for how we might make the question clearer, please include them." Participants will be asked to imagine themselves in a situation where they cannot make their own medical decisions. They may skip questions or stop the survey if they want. No information that identifies them will be collected. The survey will take about 15 minutes.

Study Description: Currently, different states have different practices for surrogate decision-making for incarcerated persons who are not able to make their own decisions. These differences raise the challenge of determining which approach or approaches are the best. To address this issue, our research team has developed a questionnaire for incarcerated persons. This questionnaire will be integrated into a software application known as Edovo (https://www.edovo.org/), which is tailored for use in correctional facilities. This research aims to gather incarcerated persons" preferences related to surrogate decision-making. The study team hopes to identify best practices that could inform practices and policies across states, ultimately enhancing the support provided to this vulnerable population. Objectives: Primary Objective: Explore incarcerated persons' views regarding surrogate decision-making if they become unable to make their own medical decisions. Endpoints: Primary Endpoints: 1. Describe incarcerated persons' preferences for surrogate decisionmakers if they become unable to make their own medical decisions. 2. The proportion of incarcerated persons who endorse the use of a patient preference predictor (PPP) for surrogate decision-making if they become unable to make their own medical decisions. Secondary Endpoint: The discrepancy between incarcerated persons who endorse the use of a PPP in general, but not for their own treatment.