Date of Conferral
6-28-2025
Degree
Ph.D.
School
Psychology
Advisor
Dr. Steven Linnville
Abstract
In many families in the United States, minor children fulfill care duties for sick or disabled family members living within the children’s homes. Although there is extensive research and established support systems for adult family caregivers in the context of long-term illness, children in this caregiving role have been largely overlooked, resulting in a lack of support services to meet their unique needs and challenges. Grounded in Bronfenbrenner's ecological systems theory, the purpose of this qualitative phenomenological study was to examine the experiences of children who serve as caregivers for parents with amyotrophic lateral sclerosis (ALS), a progressive and terminal disease. The participants were six adolescents aged 13 to 17. Data were collected using semistructured interviews. Findings revealed that these youth often took on significant caregiving duties, learned skills informally, and experienced intense emotions such as anxiety, sadness, and anticipatory grief. Many also described growing emotionally stronger, developing a deeper sense of purpose, and becoming more mature. This study revealed that adolescent caregivers are an often-overlooked group and highlighted the need for greater recognition, age-appropriate services, and policies that reflect the complex systems surrounding their experiences. Findings emphasize positive social change through empathy and awareness in addressing the needs of families facing catastrophic illness and call for systemic action to ensure healthier outcomes.
Recommended Citation
Thornton, Barbara, "The Experiences of Adolescent Caregivers of a Parent with Amyotrophic Lateral Sclerosis" (2025). Walden Dissertations and Doctoral Studies. 18030.
https://scholarworks.waldenu.edu/dissertations/18030
