DOI: 10.53424/balikesirsbd.1880062 ISSN: 2146-9601

Emotional Experiences of Mothers of Children Diagnosed with Duchenne Muscular Dystrophy

Ebru Bakir, Hatice Yıldırım Sarı
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Objective: To explore how mothers emotionally experience receiving a diagnosis of DMD in their child during infancy and toddlerhood. Materials and Methods: This qualitative study used an interpretative phenomenological approach. Ten mothers of children who were diagnosed with DMD before the age of three were recruited through a national DMD parent communication group. Data were collected through semi-structured interviews and analysed using interpretative phenomenological analysis. Results: Mothers’ experiences were captured in five interrelated themes reflecting a trajectory from pre-diagnostic uncertainty and intuitive concern, through diagnostic shock and disruption of future expectations, to post-diagnostic social strain and gradual emotional re-anchoring. Across all stages, maternal intuition that “something is wrong” is followed not by a single adjustment, but by a recurring cycle in which mothers regain stability and adaptation, then collapse again whenever new signs of progression or loss appear, before gradually re-adapting to life with a very young child who has a fatal disorder. Conclusion: Early DMD diagnosis profoundly disrupts mothers’ emotional, social and future orientation. The findings underscore the importance of pediatric nurses taking parental intuition seriously as clinically meaningful, offering sensitive support during both the pre-diagnostic and diagnostic stages, and providing ongoing psychosocial guidance throughout the caregiving journey as mothers repeatedly transition between periods of collapse and adaptation.

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