Project Description
Resilient Together ALS
RESILIENT TOGETHER ALS
Approximately 31,000 people in the United States
and 500,000 people worldwide are living with Amyotrophic Lateral Sclerosis
(ALS), a progressive neurodegenerative disease (NDD) that leads to loss of
motor control, difficulty swallowing, paralyses, respiratory failure, and
death. ALS is associated with substantial emotional distress after diagnosis,
and this is interdependent between patients and care-partners (together called
dyads). Untreated emotional distress is associated with more rapid
deterioration in ALS and poor quality of life in dyads. People with ALS and
their care-partners also identify existential distress, and exploring spiritual
needs, beliefs, and meaning is important in the context of terminal illness.
Combining psychosocial and spirituality skills
as part of a palliative dyadic intervention delivered early after an ALS
diagnosis is as an unexplored opportunity to prevent chronic emotional distress
and improve the lived experience of both members of the dyad. As a Kornfeld
Scholar, I will lay the groundwork to develop Resilient Together-ALS (RT-ALS),
a dyadic palliative psychosocial and spiritual intervention to prevent chronic
emotional distress. I will build relationships with patients,
care-partners, and healthcare experts to learn about lived experiences with ALS
as well as clinic and dyad preferences for a dyadic intervention. These initial
steps as a NPCRC Kornfeld Scholar will strengthen my ability compete for NIH
awards to further refine and test RT-ALS with the goal to improve the lived
experience of patients with ALS and their care-partners.
Bio
Christina Rush, PhD,
is a clinical health psychologist with the Center for Health Outcomes and
Interdisciplinary Research (CHOIR) at Massachusetts General Hospital/Harvard
Medical School (MGH/HMS). She completed pre-doctoral internship (health
psychology track) at the VA Maryland Healthcare System/University of Maryland
School of Medicine Consortium and doctoral training in clinical health
psychology at the University of Colorado Denver. At CHOIR, Dr. Rush is
the lead clinician on the Recovering Together clinical trial building
resiliency and improving emotional distress in neurocritical care patients and
their informal caregivers. Dr. Rush’s research explores the intersection of
mind-body medicine, religion and spirituality, and health and
well-being. She is leveraging this along with resources and partnerships
at CHOIR/MGH/HMS to develop dyadic interventions informed by the
biopsychosocial spiritual model for patients with ALS and their loved ones.
Email: crush2@mgh.harvard.edu