Supported Decision Making Informed Consent Tool

We propose to create a universally designed tool to aid with Supported Decision-Making (SDM) in the informed consent process. The tool will be a visual aid, which research has shown allows people with IDD to better weigh positive and negative factors of a decision (Bailey et al. 2011). Designed much like a graphic novel to appeal to our target audience, transition-age youth with IDD, this tool will contain images and plain language words that will help facilitate conversations between healthcare providers, patients with IDD, and their supporters (family members/caregivers) to understand the treatment procedure, reason for treatment, benefits and risks of accepting or rejecting treatments, and whether or not a patient wishes to consent to the procedure. As people with IDD transition to adulthood and begin making health care decisions, this tool can be used not only to support them during healthcare appointments, but also as a training tool to prepare them for what may happen when they arrive at a doctor’s office. The project team, including two individuals with IDD, will work with a graphic designer to produce a draft of an informed consent tool for a blood draw procedure. An IRB proposal will be submitted to assess design and usability of tool by three groups of people: transition-age youth with IDD, supporters, and physicians. Physicians will be surveyed and separate focus groups will be conducted for youth with IDD and supporters. Using this data, the project team will make revisions to tool. The revised draft will then be tested through mock interactions between a physician and a transition-age youth with IDD, accompanied by a supporter. Observational data will be collected during mock interactions and afterwards participants will be interviewed about their experience using this tool. Data from mock interactions will inform development of a final product. Once a final version has been developed, the tool will be disseminated as described in the Dissemination section.