An interdisciplinary approach to mindfulness as a quality of life improvement factor for people with ALS and their primary caregivers
Principal Investigator:
- Angela Genge, McGill University
Team Members:
- Francesco Pagnini, Università Cattolica del Sacro Cuore
- Lana Kim McGeary, ALS Clinic, Montreal Neurological Institute
- Antonietta Vitale, ALS Clinic, Montreal Neurological Institute
- Kendra Berry, ALS Clinic, Montreal Neurological Institute
- Maura Fisher, ALS Clinic, Montreal Neurological Institute
- Kalyna Franko, ALS Clinic, Montreal Neurological Institute
- Rami Massie, ALS Clinic, Montreal Neurological Institute
- ALS Canada
Project Overview
Mindfulness is a therapeutic technique that teaches one to focus on the present moment, while calmly acknowledging and accepting their feelings, thoughts, and bodily sensations. Previous research has demonstrated that learning mindfulness can help with navigating grief and benefit overall quality of life.
In this pilot study, the first of its kind in ALS, a specific type of mindfulness will be used. Called embodied mindfulness, this approach uses defined physical movements to enhance the ability of people living with ALS, and their caregivers, to notice variability in breathing patterns, leading to a greater sense of perceived control and in turn improved quality of life.
This six-month qualitative study will recruit 40 participants, including people living with ALS and their caregivers, to determine whether an interdisciplinary embodied mindfulness protocol that combines home and clinic exercises can improve quality of life, using multiple established measures.
The findings from this study will help to inform future care for people living with ALS. If successful, the investigators hope that mindfulness-based interventions will be considered a best-practice approach to clinical care in the future.