Abstract:
Introduction
DMD (Duchenne Muscular Dystrophy) is a moderately uncommon disease among children, which affects the activities of daily living. It is a genetic disorder characterized by progressive muscle degeneration and weakness which typically diagnosed in early childhood. There is no exact cure for DMD, but exercise has significant benefits on children with DMD in improving their independency and quality of life. However, adherence to exercise programs can be challenging, and identifying these barriers can be beneficial as the healthcare workers and the parents can take measures to overcome those.
Objective
To describe the factors and barriers for the exercise adherence of children with DMD in Lady Ridgeway Hospital (LRH), Sri Lanka.
Methods
A qualitative cross-sectional study was carried out among children (N=30) diagnosed with DMD in LRH, Borella. Convenient sampling method was used as the sampling method. Ethical clearance was obtained from the Faculty of Medicine, General Sir John Kotelawala Defence University as well as LRH. A prior informed written consent was taken from the participants. A pre-tested interviewer-administrated questionnaire was used to collect subjective data from the parents/guardians of the individuals as well as their condition, treatments and exercise program. Height and weight were measured using the standard criteria and Body Mass Index (BMI) was calculated. Focus group discussions (FGD) were carried among children as well as their parents/guardians until the saturation point was reached. In depth interviews were done with the pediatric physiotherapists at the Lady Ridgeway Hospital. Inductive thematic approach was used to analyze the data from the focus group discussions and in-depth interviews. Subjective data were analyzed using Statistical Package for Social Sciences (SPSS) version 25.
Results
The mean age of the children diagnosed with DMD was 9.9 ± 3.0 years. The mean age of the mothers and fathers of the affected are 38.9 ± 5.9 years and 43.7 ± 7.6 years respectively. A mean BMI was 17.6 ± 5.3 kg/m2. The mean percentage of clinic visit completion ratio was 89.2 ± 13.4 %. Three focus group discussions were carried out with the parents/guardians of the children diagnosed with DMD and the identified themes of the discussion are as follows.
Parents’/guardians’ perception in benefits and issues occurring while following the exercise program
Parents’/guardians’ reasoning about the less child supportive behavior towards the exercise program
Parents’/guardians’ perception about the child’s support towards the exercise program
Parents’/guardians’ suggestions and methods used in order to make the individual’s exercise program more effective
Five focus group discussions were carried out with the parents/guardians of the children diagnosed with DMD and the identified themes of the discussion are as follows.
Positive connections towards exercise adherence
Negative connections towards exercise adherence
10 in-depth interviews have been carried out with the physiotherapists who are working at the LRH and the identified themes of the in-depth interviews are as follows.
Difficulties faced during the course of treatments
Parent and patient reactions and attitudes towards exercises
Physiotherapist’s perception on condition and treatments
Conclusion
Our study investigated factors affecting exercise adherence in children with DMD, including socioeconomic, environmental, and anthropometric aspects. Focus group discussions and in-depth interviews revealed factors such as family support, parents' education, household income as well as barriers including transportation, economic barriers, physical barriers effect the exercise adherence of children diagnosed with DMD in Sri Lanka.
Biography:
Dr. Prasangi Dabare is an academic and senior lecturer in physiotherapy, currently serving as the Head of the Department of Physiotherapy at the Faculty of Allied Health Sciences, General Sir John Kotelawala Defence University, Sri Lanka. With a profound background in both clinical practice and academic research, Dr. Dabare has made significant contributions to the field of physiotherapy, particularly in pediatric and geriatric care, physical activity among children and adolescents, and body composition analysis methods.
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