The primary aims of this project are two-fold: to develop a “mindful” online community of people with ALS and their caregivers, and to test its efficacy in the improvement of their quality of life. These aims include testing both the feasibility and the psychosocial effects of a novel dual intervention. The study is built upon previous research by this study team testing an online mindfulness intervention for people with ALS and their caregivers, as well as research about the positive impact that mindfulness has on the ALS community.

This study proposes to extend the scalability of the intervention to reach a much larger segment of the ALS population and to provide a social forum to reduce isolation and increase quality of life. In this study, ALS patients and caregivers will first complete an online mindfulness training program. The participants will then join a social community using a dedicated social sharing platform. The social sharing platform will be characterized by prompts and suggestions to encourage the participants to apply and share “mindful knowledge” in the form of reflections, creative problem-solving, and positive engagement. 

The primary hypothesis for this study is that the active participation of a newly created “mindful community” will have a positive effect on the participants’ well-being in comparison to an active control group.

A secondary aim of the study will be to qualitatively analyze the materials produced by the participants, and to verify the association between these contents and the effects on the considered outcomes. This has been accomplished in other work using, e.g., sentiment analysis in which techniques automatically extract “sentiment” from a piece of text (for example, whether it is positive or negative, or whether the person writing it was angry or excited, etc.).

The long-term goal is to provide ALSA and the entire ALS community with a social tool that could be used as a continuous mindfulness intervention and with the potential to be a highly scalable treatment.

Working group:

• Prof. Pagnini Francesco - Faculty of Psychology

Partners:

• Harvard University - U.S.A. (Coordinator)
• Università Cattolica del Sacro Cuore - Italy