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This study was planned to investigate the parental influence on physical activity (PA) level and participation in ambulatory children with Duchenne muscular dystrophy (DMD). For this purpose, 30 children with DMD between the ages of 8-18, who were between Levels 1-4 according to the Brooke Lower Extremity Functional Classification (BLEFC), were included in the study. The demographic information of the participants and their detailed information about the disease were recorded. Parents' PA level was assessed via International Physical Activity Questionnaire-Short Form (IPAQ-SF); Children's PA level was assessed via Physical Activity Questionnaire for Children (PAQ-C) and pedometer, participation was assessed via Pediatric Outcomes Data Collection Instrument (PODCI), and parental influence was assessed via Children's Physical Activity Correlates (CPAC). Additionally, children's PA interest was assessed via Children's Attraction to Physical Activity (CAPA). SPSS 25 program was used in the statistical analysis of the evaluation results. The mean age of the individuals included in the study was found to be 8,70±0,84. Parental influence evaluations, positive and weak-moderate correlations were determined between CPAC Questionnaire "Parental Influence" sub-dimension with PAQ-C (r=0,582), CAPA (0,432) and PODCI (r=0,372) (p<0,05). A positive, moderate correlation was found between the PA levels of mothers obtained from IPAQ-SF and PAQ-C (p<0,01). The results of the study show that the parents, especially the mother who is the primary caregiver, can be an important factor to improve the PA levels, increase their attraction to PA and participation in children with DMD.
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Duchenne Muscular Dystrophy (DMD) is the most common neuromuscular disease in childhood with an incidence of 1 per 3600-6000 live male births worldwide. It shows X-linked recessive inheritance. It is caused by a mutation in the gene encoding the dystrophin protein localized in Xp21.2. It is characterized by complete or partial deficiency of the cell membrane protein called dystrophin. Deficiency of dystrophin causes disruption of the structure of the muscle sarcolemma. Accordingly, the stress caused by repetitive contractions damages the sarcolemma. This deficiency leads to continuous degeneration of muscle fibers. As a result, it causes progressive loss in the strength of skeletal muscles, respiration and later cardiac muscles. As the disease progresses, due to muscle damage and weakness, the child's ability to perform daily tasks such as climbing stairs and walking short distances becomes impaired and functional skills decrease. Respiratory and cardiac muscle involvement is the most important cause of mortality in these patients before the age of 30.
Participation is a measurable outcome of health. This measure is defined as direct participation in life by the International Classification of Functioning, Disability and Health (ICF). Participation for children and youth includes activities such as personal care, mobility, social relations, education, play and leisure activities. Disabled children participate less in daily activities than healthy children.
Considering the progression of their diseases, the participation of children with DMD in physical activity decreases over time. Functional disorders in children with DMD affect their daily living activities, limiting their participation in similar activities with their peers. Research shows that children with DMD have lower levels of physical activity from a young age than their healthy peers. There are also studies in the literature showing that there is a decrease in the functional independence and quality of life of children with DMD as well as their families and caregivers.
Participation in regular physical activity in disabled children and youth contributes to physical, psychosocial and social development. Safe and effective physical activity can positively affect the nutritional status, mobility and social participation of patients with DMD throughout their lives. This indicates that we need to improve our understanding of the determinants and mechanisms underlying the thinking of children and adolescents with DMD regarding physical activity behaviors.
Parents play an important role in shaping their children's beliefs, attitudes, and behaviors across a wide range of developmental domains, including cognitive, social, and emotional domains. In addition to studies examining physical activity interventions for healthy children and youth, strong evidence has been shown that families can have a significant influence in increasing the physical activity of children and youth with disabilities. Parental behaviors that promote physical activity in children have two aspects: 1) role modeling, which includes efforts to be active alongside the parent's interest in physical activity, and 2) parental encouragement and involvement, providing access and opportunities for the child to be active (for example transport to sports complexes and parks). Studies examining the influence of parents on physical activity behaviors of children and adolescents shows that there is a positive relationship between parental behaviors and the activities in which children participate.
When the literature on individuals with DMD was examined, a limited number of studies were found that investigated both the physical activity level of the child with DMD and the effects of the parent on the activity level of the child with DMD. Therefore, the aims of our study are to determine the physical activity levels of school-age children with Duchenne Muscular Dystrophy who can walk and to investigate the effect of the family on the child's physical activity level and participation.
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