Abstract

PALACIOS-ESPINOSA, Ximena et al. Experiences of caregivers of boys with Duchenne Muscular Dystrophy: “When I look at him, my world falls apart”Experiencias de cuidadoras de niños con Distrofia Muscular de Duchenne: “Cuando lo volteo a mirar, se me une el cielo con la tierra”. Interdisciplinaria [online]. 2021, vol.38, n.3, pp.221-238. ISSN 1668-7027.  http://dx.doi.org/10.16888/interd.2021.38.3.13.

Duchenne muscular dystrophy (DMD) is a neuromuscular disease that leads to progressive and fatal physical deterioration. The progression of this disease requires frequent or permanent care that implies high levels of demand for the caregivers of children who have developed DMD. Certainly, this disease affects diagnosed children and their caregivers as well. The support from the health system is scarce for both, which translates into an intense burden for the mothers and women of the family who care the person diagnosed with DMD during their lifetime. This qualitative study with phenomenological approach aimed to analyze the meaning of the experience of being a caregiver for boys and young men living with DMD in Colombia. After obtaining their informed consent, caregivers were interviewed and a thematic analysis of their narratives was performed to determine three key topics that endow their experiences with meaning: (1) finding out about the disease, (2) living according to the needs of boys and young men, and (3) providing a new meaning to life. The results show that the meaning of DMD is strongly associated with intense suffering and psychological stress, with a high negative burden, especially during the initial years after diagnosis. The study suggests that it is important to assimilate and process these experiences and findings to learn how to live with DMD and identify the certainty of a child’s premature death.

Keywords : caregivers; women; Duchenne muscular dystrophy; qualitative research; interpretative phenomenological analysis; thematic analysis; disabled children.

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