Resilient Together-ALS (RT-ALS): A Dyadic Mind-body Meaning Intervention for People With ALS and Their Informal Care-partners
Massachusetts General Hospital
Summary
The purpose of this study is to pilot a resiliency and coping intervention for persons recently diagnosed with Amyotrophic Lateral Sclerosis (ALS) and their primary informal caregivers. The data investigators gather in this study will be used to further refine our intervention.
Description
The goal of this study to refine our proposed intervention Resilient Together ALS (RT-ALS) through an open pilot. The investigators will deliver an open pilot of the intervention (N= up to10 dyads; up to 20 participants total) to evaluate initial feasibility and acceptability using exit interviews and pre-post assessments. The open pilot will take place over Zoom, with participants recruited from the Massachusetts General Hospital's Sean M. Healey and AMG Center for ALS. Study clinicians will deliver 6, 30-45 minute sessions over Zoom. All participants will complete measures at baseline and a…
Eligibility
- Age range
- 18+ years
- Sex
- All
- Healthy volunteers
- No
Inclusion Criteria for patient with ALS: * recent (within \~2 months) of first appointment at Healey Center for diagnosis of ALS documented in Epic (based on recommendations from neurologists) * ability to understand the study and research protocol as determined by a standardized teach-back method of assessment * ability to communicate by writing, speaking, or assistive communication device Inclusion Criteria for dyad: * English speaking adults * dyad lives together * at least one partner endorses clinically significant emotional distress during screening (\>7 on either subscale of the HADS…
Interventions
- BehavioralResilient Together ALS
This intervention will teach resiliency and coping skills (mindfulness, meaning making, etc) to dyads soon after ALS diagnosis in order to manage distress associated with an ALS diagnosis. These sessions will take place over Zoom with both the person diagnosed with ALS and their primary informal caregiver.
Location
- Massachusetts General HospitalBoston, Massachusetts