Navigating Life and Loss in Pediatric Multiple Sclerosis

Multiple sclerosis (MS) is a chronic disease of the central nervous system that can cause unpredictable disability. Over the past 10 to 15 years, practitioners and researchers have come to recognize that children and adolescents are at risk for this disease. Drawing on the experiences of pediatric MS patients and their parents, I designed this study to explicate the process of adjustment to the disease. Using Charmaz's constructivist grounded theory methodology, I developed a preliminary theory that captures the experience of grief in the adjustment process of young people with MS. The core of the theoretical model focuses on two separate, yet overlapping processes: recurring loss and carrying on. Significant turning points influenced the oscillation between these two processes, highlighting the interconnection of intrapersonal and interpersonal dynamics in adjustment to the disease. Results reinforce and extend current grief literature and provide an alternative perspective on adjustment to pediatric chronic illness.