title: 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.
authors.affiliation: Graduate School of Human Sciences, Osaka University, Suita, Osaka, Japan.
authors.forename: Haruo
authors.initials: H
authors.lastname: Fujino
authors.affiliation: Division of Child Neurology, National Hospital Organization Toneyama National Hospital, Toyonaka, Osaka, Japan Department of Neurology, National Hospital Organization Toneyama National Hospital, Toyonaka, Osaka, Japan.
authors.forename: Toshio
authors.initials: T
authors.lastname: Saito
authors.affiliation: Department of Neurology, National Hospital Organization Toneyama National Hospital, Toyonaka, Osaka, Japan.
authors.forename: Tsuyoshi
authors.initials: T
authors.lastname: Matsumura
authors.affiliation: Graduate School of Human Sciences, Osaka University, Suita, Osaka, Japan.
authors.forename: Saki
authors.initials: S
authors.lastname: Shibata
authors.affiliation: Graduate School of Human Sciences, Osaka University, Suita, Osaka, Japan.
authors.forename: Yuko
authors.initials: Y
authors.lastname: Iwata
authors.affiliation: Department of Neurology, National Hospital Organization Toneyama National Hospital, Toyonaka, Osaka, Japan.
authors.forename: Harutoshi
authors.initials: H
authors.lastname: Fujimura
authors.affiliation: Department of Neurology, National Hospital Organization Toneyama National Hospital, Toyonaka, Osaka, Japan Shinno Clinic, Nara, Japan.
authors.forename: Susumu
authors.initials: S
authors.lastname: Shinno
authors.affiliation: Graduate School of Human Sciences, Osaka University, Suita, Osaka, Japan osamui@hus.osaka-u.ac.jp.
authors.forename: Osamu
authors.initials: O
authors.lastname: Imura
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D003142:Communication; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009035:Mothers / Q000523:psychology*; D020388:Muscular Dystrophy, Duchenne; D009462:Neurology / Q000379:methods; D010820:Physicians; D011368:Professional-Family Relations; D011795:Surveys and Questionnaires
keywords: Duchenne muscular dystrophy; communication; mothers; physicians; qualitative study