Neurologists’ Emotional Experiences in Caring for Individuals With Amyotrophic Lateral Sclerosis: An Exploratory Study
Date of Submission
Doctor of Psychology (PsyD)
Robert A DiTomasso, PhD, ABPP
Stephanie H Felgoise, PhD, ABPP
Beverly White, PsyD
Zachary Simmons, MD
Amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s disease, is a progressive neurodegenerative disease, with a reported incidence of 2 in 100,000 people in Western countries, that has no known cure and results in death. The life expectancy for patients with ALS is approximately 3 years. This study utilized a qualitative research design to explore neurologists’ experiences in caring for patients with ALS and their families. A semistructured interview was conducted with 11 neuromuscular neurologists who treat patients with ALS. This study explored their perceived challenges of caring for patients with ALS and their caregivers, coping strategies for work-related stress, training experiences regarding communication skills and end-of-life discussions, perceived rewards from their work, emotional reactions, and perceptions of burnout. Twelve themes were identified: diagnosis versus end of life, diagnosis and demographics, physicians as healers, the challenges of frontotemporal dementia, professional pride, burnout, patient and caregiver gratitude, balancing hope versus reality, the challenges of caregivers and families, coping, communication training, and perceived resources to cope. Two theories were developed from this data. The ALS provider two-factor existential reward theory states that neurologists who personally identifies with patients struggle to communicate the diagnosis and treat the patients, but also experience a sense of appreciation and gratitude for their own and their families’ health. The second theory, the ALS provider grief and resource theory, posits that a neurologist’s history of losing a family member, coupled with limited clinic resources, appears to foster burnout.
Hennessey, Ashley E.P., "Neurologists’ Emotional Experiences in Caring for Individuals With Amyotrophic Lateral Sclerosis: An Exploratory Study" (2016). PCOM Psychology Dissertations. 400.