Swimming and the physical, social and emotional well-being of youth with cerebral palsy
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Declerck, Marlies Hilde Philip
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Cerebral palsy is the most common motor disability in childhood. The disorders of movement and posture are characterised by abnormal patterns of movement related to defective movement coordination and regulation of muscle tone. Secondary problems that may develop include perceptions of fatigue and pain. Difficulties with body function and structure affect the levels of activity and participation of the person, such as functional independence, walking ability and participation in leisure activities. These multiple facets of functioning contribute to the known physical inactivity problem apparent in youth with cerebral palsy. In addition, these low physical activity levels contribute to further deterioration of functioning. Hence, a vicious cycle of deconditioning exists. A community-based swimming programme was proposed to combat this vicious cycle. A systematic review on the effect of an aquatic intervention on the multiple facets of functioning of youth with cerebral palsy revealed no studies that measured the effect on pain, coordination and quality of life. Moreover, none of the authors reported the perceived enjoyment of the participants during the intervention. Furthermore, there was a lack of controlled studies reporting the effect of a swimming intervention on walking ability, fatigue, functional independence, self-perception, participation in leisure activities and aquatic skills in ambulatory youth with cerebral palsy. Consequently, the aim of this thesis was to investigate the effect of swimming on these multiple facets of functioning that are associated with the low physical activity levels, in youth with cerebral palsy. A randomised controlled cross-over design was implemented to investigate the effect of a 10-week swimming intervention on pain intensity, fatigue, walking ability, bilateral and upper limb coordination, functional independence, perceived competence, global self-worth, quality of life and swimming skills. A pre-test – post-test design was used to assess the effect of taking part in a swimming programme on participation in leisure activities. Fourteen 7 to 17 year-old youth with cerebral palsy with the ability to walk with or without walking aids completed the tests on all measurement occasions. All youth had a high adherence towards the programme, participated in the intervention with high levels of enjoyment, and most youth continued to participate in swimming after completing the programme. Moreover, no adverse events due to the programme were reported and no participants withdrew from the intervention. Swimming skills improved significantly over the 10-week swimming programme, and improved significantly more than over the control period. The changes were retained throughout a 20-week follow-up period. Positive trends of improvement were evident for walking distance at maximum walking speed, upper limb coordination, functional independence in social functioning and mobility, and perceived motor competence. The intervention was not associated with increases of pain and fatigue. Participation in the swimming programme did not affect bilateral coordination, functional independence in self-care, self-perception and quality of life. The evidence of the pre-test – post-test study suggests that learning the skill of swimming encouraged participation in activities of the formal domain, active-physical and skill-based activities, and facilitated youth to engage in aquatic activities. No control data were obtained in the pre-test – post-test study; however, the results are promising in view of the known deterioration in participation with increasing age. Additionally, the present study showed that the perceptions of youth with cerebral palsy that learning a new skill is too time consuming, and that physical activity is not fun and carries a risk of injury, pain and fatigue, were eliminated in the swimming program. The consolidation of swimming skills and high levels of enjoyment during the programme, are expected to improve participation, engagement and adherence to physical activity, which was confirmed in the present study as youth participated more in aquatic activities after one year than before the start of the study. It was concluded that swimming is an enjoyable and safe community-based physical activity that may have a positive effect on the physical, social and emotional well-being in 7 to 17 year-old youth with cerebral palsy with the ability to walk. The elimination of some of the barriers confronted by youth with cerebral palsy to engaging in physical activity is important with regard to the sustainment of a physically active lifestyle. The findings suggest that participation in swimming may aid in breaking the cycle of deconditioning.