Abstract
BackgroundYouth with spina bifida (SB) are less fit and active than other groups with childhood disability. While recent studies have shown benefits of exercise training, the increased fitness levels do not sustain or lead to increased levels of physical activity (PA) in these children. Therefore, it seems important to explore which factors are associated with participation in PA (or lack of) in youth with SB. The objective of this study is to describe both personal and environmental factors that are important for participation in physical activity as experienced by these children and their parents, in order to better develop intervention strategies to improve participation in PA in youth with SB.MethodsEleven semi-structured interviews with parents of children with SB aged 4–7 years, nine focus groups with youth with SB (n = 33, age 8–18 years) and eight focus groups with their parents (n = 31) were conducted, recorded and transcribed verbatim. Two independent researchers analyzed the data. Central themes for physical activity were constructed, using the model for Physical Activity for Persons with a Disability (PAD model) as a background scheme.ResultsData showed that youth with SB encountered both personal and environmental factors associated with participation in PA on all levels of the PAD model. Bowel and bladder care, competence in skills, sufficient fitness, medical events and self-efficacy were important personal factors. Environmental factors that were associated with physical activity included the contact with and support from other people, the use of assistive devices for mobility and care, adequate information regarding possibilities for adapted sports and accessibility of playgrounds and sports facilities.ConclusionsOur findings suggest that a variety of both personal and environmental factors were either positively or negatively associated with participation in PA. An individual approach, assessing possibilities rather than overcoming barriers within and surrounding the child may be a good starting point when setting up intervention programs to improve participation in PA. Therefore, assessment of both personal and environmental factors associated with physical activity should be standard care within multidisciplinary intervention programs aimed to encourage healthy active lifestyles in youth with SB.
Highlights
Youth with spina bifida (SB) are less fit and active than other groups with childhood disability
Data showed that youth with SB encountered a variety of both positive as negative personal and environmental factors for physical activity (PA) during childhood on all levels of the PAD model, with only minor differences between the children, adolescents and the parents
The goal of this study was to describe both personal and environmental factors that are important for participation in physical activity as experienced by both youth with SB and their parents, in order to better develop intervention strategies to improve participation in PA
Summary
Youth with spina bifida (SB) are less fit and active than other groups with childhood disability. Due to advances in the medical approach, mortality rates have decreased over the last years and 75%-80% of children with SB can be expected to live to be adults [3,4]. This requires a different approach in management of these patients from childhood into adulthood, focusing on the pathological aspects, and at the secondary prevention and healthy active living [5]. Because of its presumed relation with fitness and health [6], and because of increasing evidence suggesting that healthy and active children become healthy and active adults [7]
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