Serious Illness

Lay / General Audience Summary Many older adults living with serious illnesses experience high levels of emotional distress, including anxiety, sadness, fear, and feeling overwhelmed. These feelings often worsen as illness progresses and can make physical symptoms harder to manage, reduce quality of life, and increase the use of medications. Unfortunately, many people with serious illness cannot access mental health care because there are not enough providers, services are hard to reach, appointments are physically exhausting, or care is not available in their language. This study will test a new way of delivering emotional support that does not require in-person therapy. The program teaches practical coping skills that help people manage strong emotions and stress. These skills are delivered through short videos and daily supportive check-ins using an automated phone or text system that people can use from home. The system is available in many languages and can be used on basic mobile phones, making it accessible to a wide range of patients. We will enroll older adults with serious illnesses such as cancer, heart disease, lung disease, or kidney disease who are experiencing emotional distress. Participants will be randomly assigned to receive either their usual medical care alone or usual care plus the new skills program. We will examine whether people find the program easy to use, helpful, and acceptable, and whether it improves their confidence in managing difficult emotions and reduces distress. The goal of this project is to develop a low-burden, widely accessible way to support emotional well-being for people living with serious illness. If successful, this approach could expand access to mental health support for patients who currently have few options.

The purpose of this study is to determine if it is feasible and acceptable to recruit for and deliver the AI Assisted Personalized Legacy Program intervention to patients with serious illness.

The goal of this trial is to compare two types of patient, public and clinician involvement (PPCI) in research: Consultative PPCI and Collaborative PPCI. The study team will compare these methods of PPCI in a randomized clinical trial (RCT) in which PPCI participants will engage with research teams on one of three real qualitative research interview studies addressing topics: 1) pediatric mental health, 2) cancer screening and 3) serious illness. Qualitative interviews are conversations with people about their experiences and perspectives. In all three qualitative studies, PPCI participants will help us at every stage of the research, from design (making choices about how to set up the study) through dissemination (sharing findings). The researchers do not know about any quantitative (numbers) evidence from RCTs about how well different PPCI approaches work. As far as the study team knows, this is the first RCT of PPCI approaches. Given this gap in knowledge, the research question is: How does a Consultative PPCI approach compare to a Collaborative PPCI approach in increasing engagement and partnership trust in research, particularly among historically underrepresented groups? The researchers' best guess (hypothesis), considering the information available, is that Collaborative PPCI will increase PPCI participant engagement, trust and the patient-centeredness of research more than Consultative PPCI.