A phenomenological study on the life experiences of adolescents with a parent diagnosed with multiple sclerosis

Abstract

Multiple sclerosis (MS) is a chronic neurological disease that significantly affects not only individuals but also their families, especially children. Although awareness of the psychosocial impact of parental MS is increasing, research focusing on adolescents’ experiences remains limited. This study aimed to explore the life experiences of Turkish adolescents aged 14–18 who have a parent diagnosed with MS. A descriptive phenomenological design was adopted to examine their subjective experiences in depth. Data were gathered through semi-structured interviews, then analyzed using Giorgi’s phenomenological method. Ten adolescents were selected via purposive sampling from a neurology outpatient clinic in Türkiye. Thematic analysis revealed four key themes: emotional responses to the MS diagnosis, changes in intra-family relationships, the influence of the parent’s MS on adolescents’ lives, and academic challenges. Findings indicated emotional strain, increased responsibilities, social restrictions, and academic difficulties. Participants also used metaphors to articulate emotional complexity and shifting family roles.