Relating Physical Decline with Reevaluating Goals of Care: A Qualitative Study of Young Men with Duchenne Muscular Dystrophy and Their Caregivers (RP405)

2020 ◽  
Vol 60 (1) ◽  
pp. 216-217
Author(s):  
Daniel Grossoehme ◽  
Rachel Thienprayoon ◽  
Hemant Sawnani ◽  
Ian Rossman ◽  
Kathryn Mosher ◽  
...  
Keyword(s):  
Duchenne Muscular Dystrophy ◽  
Muscular Dystrophy ◽  
Qualitative Study ◽  
Young Men ◽  
Goals Of Care ◽  
Physical Decline

scholarly journals Respiratory Telerehabilitation of Boys and Young Men with Duchenne Muscular Dystrophy in the COVID-19 Pandemic

2021 ◽  
Vol 18 (12) ◽  
pp. 6179
Author(s):  
Agnieszka Sobierajska-Rek ◽  
Łukasz Mański ◽  
Joanna Jabłońska-Brudło ◽  
Karolina Śledzińska ◽  
Eliza Wasilewska ◽  
...  
Keyword(s):  
Duchenne Muscular Dystrophy ◽  
Physical Therapy ◽  
Muscular Dystrophy ◽  
Healthcare System ◽  
Online Survey ◽  
Young Men ◽  
The Mean ◽  
Respiratory Exercises

Background: The COVID-19 pandemic forced reorganization of the multidisciplinary healthcare system for Duchenne muscular dystrophy. Digital solutions seem to be optimal for providing rehabilitation at this time. The aim of this study was to investigate whether it is possible to conduct respiratory physical therapy with the use of telerehabilitation in Duchenne muscular dystrophy. Methods: The study was conducted during an online conference for families with DMD. During the physical therapy panel we showed the video with the instructions of respiratory exercises. All participants (n = 152) were asked to fill in the online survey evaluating the quality, acceptance, and understanding of the instructions. Results: The survey was filled in by 45 (29.6%) participants. The mean rating of satisfaction was 4.70/5, and for intelligibility was 4.78/5. Thirty-seven (82.2%) patients declared that they had performed the exercises, all caregivers declared that it was possible to perform the proposed exercises a few times a week or daily, and only two respondents replied to invitations to individual online sessions. Conclusions: Findings from the study show that respiratory telerehabilitation may be implemented for DMD patients; however, the interest in digital rehabilitation among caregivers of DMD boys in Poland is low. The reasons for this situation require further research.

NIV in Duchenne Muscular Dystrophy : A qualitative study

2017 ◽  
Author(s):  
Helen Molloy ◽  
Victoria Beesley ◽  
Dipansu Ghosh ◽  
Mark Elliot
Keyword(s):  
Duchenne Muscular Dystrophy ◽  
Muscular Dystrophy ◽  
Qualitative Study

Engaging Participants in Rare Disease Research: A Qualitative Study of Duchenne Muscular Dystrophy

2016 ◽  
Vol 38 (6) ◽  
pp. 1474-1484.e2 ◽  
Author(s):  
Roxanna M. Bendixen ◽  
Lauren P. Morgenroth ◽  
Kristin L. Clinard
Keyword(s):  
Duchenne Muscular Dystrophy ◽  
Muscular Dystrophy ◽  
Qualitative Study ◽  
Rare Disease ◽  
Disease Research

Siblings of young people with Duchenne muscular dystrophy – A qualitative study of impact and coping

2011 ◽  
Vol 15 (1) ◽  
pp. 21-28 ◽  
Author(s):  
Joy Read ◽  
Maria Kinali ◽  
Francesco Muntoni ◽  
Timothy Weaver ◽  
M. Elena Garralda
Keyword(s):  
Duchenne Muscular Dystrophy ◽  
Muscular Dystrophy ◽  
Young People ◽  
Qualitative Study ◽  
And Coping

scholarly journals Pain experience, expression and coping in boys and young men with Duchenne Muscular Dystrophy – A pilot study using mixed methods

2016 ◽  
Vol 20 (4) ◽  
pp. 630-638 ◽  
Author(s):  
Anne Hunt ◽  
Bernie Carter ◽  
Janice Abbott ◽  
Arija Parker ◽  
Stefan Spinty ◽  
...  
Keyword(s):  
Mixed Methods ◽  
Duchenne Muscular Dystrophy ◽  
Pilot Study ◽  
Muscular Dystrophy ◽  
Young Men ◽  
Pain Experience ◽  
And Coping
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