A comprehensive review of the literature surrounding the adolescent experience of a parent's amyotrophic lateral sclerosis or familial amyotrophic lateral sclerosis diagnosis

Emily R. Johnson
Wed, 22 Apr 2026 17:43:04 PDT

Amyotrophic lateral sclerosis (ALS) is a neuro-muscular disease causing progressive paralysis and eventual death of the patient. Adolescent children who have a parent with ALS or other terminal illnesses have ability to comprehend the course of the disease's processes, death and the suffering of others, which often leads to the teen experiencing existential issues including loneliness, meaninglessness, a lack of personal freedom or responsibility, and a fear of death. The following research paper provides a thorough review of the literature surrounding the effects of a parental ALS diagnosis on adolescent development, existential concerns and grief response. Suggestions for resolving existential concerns and grief are presented. The knowledge gained from the literature review was used to create a web-based resource for adolescent children of ALS patients. The application and product portions of this paper contain a thorough description of the web-based resource, the information it contains, and ways that it can be useful to adolescents and members of their support system.