How Physicians Support Mothers of Children with Duchenne Muscular Dystrophy

Abstract

Communicating about Duchenne muscular dystrophy and its prognosis can be difficult for affected children and their family. We focused on how physicians provide support to the mothers of children with Duchenne muscular dystrophy who have difficulty communicating about the condition with their child. The eligible participants were certified child neurologists of the Japanese Society of Child Neurology. Participants responded to questionnaires consisting of free descriptions of a vignette of a child with Duchenne muscular dystrophy and a mother. We analyzed 263 responses of the participants. We found 4 themes on advising mothers, involving encouraging communication, family autonomy, supporting family, and considering the child's concerns. These results provide a better understanding of the communication between physicians and family members who need help sharing information with a child with Duchenne muscular dystrophy. These findings will assist clinical practitioners in supporting families and the affected children throughout the course of their illness.

The experiences of patients with Duchenne muscular dystrophy in facing and learning about their clinical conditions

“…In contrast, non-disclosure can result in anxiety, guilt, misunderstanding, and higher levels of tension in parents and the affected children. Accordingly, the manner in which patients are informed of their conditions and their own beliefs and attitudes regarding this disclosure can be determinants of their psychological adjustment and acceptance of their conditions (Eiser, Patterson, & Tripp, 1984 ; Fujino et al, 2015 ). However, as far as we know, patients’ experiences of the timing of being informed about their diagnosis and the process of becoming conscious of their disease have not been investigated.…”

Understanding carer resilience in Duchenne muscular dystrophy: A systematic narrative review

“…Furthermore, the challenge of diagnosis goes beyond the reactions of the carer to the task of explaining the nature of the condition to the affected child. 29…”

Psychological Case Conference Following the Death of a Patient With Neuromuscular Disease: A Source of Emotional Support for Participating Medical Staff

“…Although differences in knowledge among professionals could lead to communication barriers (6), an interdisciplinary conference may have potentially positive effects on care coordination and disease management (7). Interdisciplinary coordination is needed with greater frequency in especially difficult cases (8,9). Furthermore, sometimes the goals of the healthcare professionals and the patients’ desires conflict (10,11).…”