La experiencia de niños y jóvenes colombianos que viven con distrofia muscular de Duchenne

Translated title of the contribution: The experience of Colombian boys and young men living with Duchenne muscular dystrophy

Ximena Palacios-Espinosa, Heidi Mateusb, Martha Dávalos, Jennifer Gracia, Hamer Bastidas-Bilbao

Research output: Contribution to journalArticlepeer-review

Abstract

Duchenne muscular dystrophy (DMD) is a chronic disease that primarily affects males and is characterized by progressive physical impairment and, eventually, death. This qualitative study aimed to explore and understand the experience of diagnosis and disease in young people with DMD living in Bogotá, Colombia. After securing approval from the Research Ethics Committee (CEI-ABN026-00031 1), nine individuals took part of a semi-structured interview, and their narratives were analyzed using thematic analysis. The main topics developed throughout the narratives were: negative representation of the disease; fear; difficulty expressing emotions; the patient-doctor relationship; the wheelchair; the caregivers and coping strategies. We conclude that young people affected by DMD face several challenging experiences that underscore the need for better, more respectful, and compassionate interactions with healthcare providers. Also, their experiences are indicative of a socio-cultural context that needs to become more responsive and compassionate towards young people and disability.

Translated title of the contributionThe experience of Colombian boys and young men living with Duchenne muscular dystrophy
Original languageSpanish
Pages (from-to)1-15
Number of pages15
JournalPsicologia USP
Volume32
DOIs
StatePublished - 2021

All Science Journal Classification (ASJC) codes

  • Psychology(all)

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