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

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.

scholarly journals A Movement Monitor Based on Magneto-Inertial Sensors for Non-Ambulant Patients with Duchenne Muscular Dystrophy: A Pilot Study in Controlled Environment

PLoS ONE ◽  
2016 ◽  
Vol 11 (6) ◽  
pp. e0156696 ◽  
Author(s):  
Anne-Gaëlle Le Moing ◽  
Andreea Mihaela Seferian ◽  
Amélie Moraux ◽  
Mélanie Annoussamy ◽  
Eric Dorveaux ◽  
...  
Keyword(s):  
Duchenne Muscular Dystrophy ◽  
Pilot Study ◽  
Muscular Dystrophy ◽  
Inertial Sensors ◽  
Controlled Environment

scholarly journals Quality Of Life And Coping In Parents Raising Children With Duchenne Muscular Dystrophy (DMD) In Nepal

2020 ◽  
Vol 9 (2) ◽  
pp. 30-41
Author(s):  
M Rana ◽  
R Prajapati ◽  
J Chaudhari ◽  
B Gautam ◽  
B Gurung
Keyword(s):  
Quality Of Life ◽  
Duchenne Muscular Dystrophy ◽  
Muscular Dystrophy ◽  
Coping Strategies ◽  
Psychological Health ◽  
World Health ◽  
Life Questionnaire ◽  
Raising Children ◽  
And Coping

Introduction: Quality of Life (QoL) and Coping are important components of mental health, especially important to parents raising children with Duchenne Muscular Dystrophy (DMD). Children with DMD face difficulties due to their disability and create special challenges for parents. Material And Method: The study aimed to assess QoL, demographic variables and coping strategies of parents raising children with DMD in Nepal. A descriptive cross-sectional design was adopted to collect data from 32 parents (mothers = 15, 47%; fathers =17, 53%) through purposive sampling. Socio-demographic pro-forma, World Health Organization's Quality of Life Questionnaire-BREF (WHOQOL-BREF) and Brief COPE Inventory were assessed. Results: The results revealed parents scores were below cutoff <60, indicating probable poor quality of life. QOL was moderately positively correlated with coping strategies and highly positively correlated with emotion-focused coping. There were significant differences in psychological health of parents in reference to their occupation, and in reference to their hospital born children. Parents in government job had better psychological health and parents into private business significantly used emotion-focused coping. Mutual caregivers had significantly better psychological health. Parents without health related problems significantly adopted problem focused coping and emotion focused coping. Conclusion: These findings will help stakeholders to understand DMD children and their impact on QOL and coping of parents and will facilitate to develop appropriate psychosocial intervention programs for the parents for the effective management of their children and their psycho-social wellbeing.

scholarly journals Facilitators and Barriers to Wearing Hand Orthoses by Adults with Duchenne Muscular Dystrophy: A Mixed Methods Study Design

2020 ◽  
Vol 7 (4) ◽  
pp. 467-475
Author(s):  
S.L.S. Houwen-van Opstal ◽  
Y.M.E.M. van den Elzen ◽  
M. Jansen ◽  
M.A.A.P. Willemsen ◽  
E.H.C. Cup ◽  
...  
Keyword(s):  
Mixed Methods ◽  
Duchenne Muscular Dystrophy ◽  
Muscular Dystrophy ◽  
Qualitative Data ◽  
Comparative Method ◽  
Hand Function ◽  
Structured Interviews ◽  
Validated Questionnaire ◽  
Constant Comparative Method ◽  
Facilitators And Barriers

Background: To retard shortening of finger flexors in patients with Duchenne muscular dystrophy (DMD), hand orthoses are prescribed. However, many patients do not wear the orthoses regularly. To optimize orthotic interventions, we need insight into the factors influencing compliance. Objective: To evaluate the compliance regarding hand orthoses in an adult DMD population and to explore experiences and perceptions of DMD patients wearing orthoses, and of their caregivers. Methods: Mixed methods observational study, combining quantitative and qualitative data from medical charts combined with qualitative semi-structured interviews using a constant comparative method and a short validated questionnaire (D-QUEST). Results: 65 medical charts were analyzed. 48 patients were assessed as needing hand orthoses, of whom 37.5 % were compliant. Qualitative data analyses revealed (1) motivation: preservation of hand function; (2) barriers: discomfort and impediments; (3) facilitators: good fit and personalized wearing schedule; (4) fitting process: satisfactory, but patients do not readily seek help when barriers appear. Conclusions: Patients are motivated to wear hand orthoses, but often discontinue use because of orthosis-and disease-specific barriers. The identification of these barriers leads to practical and feasible recommendations concerning the orthoses and the fitting process, such as less rigid material, preservation of some function while wearing the orthoses, and fixed evaluation points. The findings were confirmed by the D-QUEST.

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