Running free: the impact of frame running on the psychosocial wellbeing and quality of life of novice and experienced athletes with cerebral palsy

Abstract

Cerebral palsy (CP) is the most common physical disability in childhood and occurs in approximately 1 in 500 live births. CP is characterised by disorders of the development of movement and posture leading to abnormal movement patterns and affecting limb movement and muscle tone causing activity limitations. The severity of impairments varies between individuals thus their activity limitations will also vary. Secondary impairments of CP include cognitive, behavioural, and emotional deficits. The difficulties with motor ability combined with the presence of any associated impairments can cause a cycle of exclusion and deterioration contributing to an inactive lifestyle with associated health risks. Physical benefits of physical activity are well researched for children with disabilities. There is less research available on the psychosocial benefits of physical activity, for children with disabilities, including those with CP. The importance of being physically active is well documented, however barriers to physical activity such as a lack of suitable activities, fear of not enjoying it, fear of failure, or fear of social exclusion are further inhibiting physical activity participation of children with CP. Frame running is an adaptive sport that offers the opportunity for children with CP to be physically active, especially those with more severe CP who are further restricted in their physical activity opportunities. Given the complex and individual nature of CP it can be difficult to identify which aspects of wellbeing (physical, psychological, or social) are most important to measure as the focus of an intervention, rehabilitation, and therapeutic programme. A two-stage Delphi survey involving parents of children with CP, health care professionals and frame running coaches identified the factors that are deemed most important when evaluating the effectiveness of a physical activity intervention for children with CP. Participants of the Delphi survey identified social inclusion, enjoyment and psychological wellbeing as the most important factors, and these results shaped the selection of psychosocial constructs for the following study. Frame running (formally known as racerunning) is a growing sport, however there is very limited research exploring frame running, and currently no research examining the effects of the frame running participation on the psychosocial wellbeing of children with CP. Five participants took part in a single-case design which examined the effects of a 12-week frame running training programme on the QoL and psychosocial wellbeing of five novice athletes around Scotland. Participants completed outcome measures in their home environment on four separate occasions, baseline, pre-, mid-, and post-training. They were also asked to rate their enjoyment level of each session to identify if frame running is viewed as an enjoyable sport, which is key for promoting engagement and adherence to the sport. The results did not show any consistent patterns regarding the impact of frame running on the participants’ psychosocial wellbeing. However, visual analysis of the data showed some trends towards improvement in some aspects of psychosocial wellbeing, specifically self-esteem and psychological wellbeing, however it is not possible to attribute these results solely to frame running participation. Furthermore, the mean rating of enjoyment (out of 5) across the 12 sessions was high at 4.7, highlighting that frame running is perceived as an enjoyable opportunity for physical activity for children with all severities of CP. The quantitative results provide an insight into the positive impact frame running participation can have on psychosocial wellbeing of children with CP, but further research is needed to confirm these findings in a larger sample to a control population may provide a clearer picture. With no consistent pattern of the effect of frame running participation on QoL and psychosocial wellbeing established for novice athletes, a subsequent qualitative study explored the perceived impact of frame running on competitive athletes’ QoL and psychosocial wellbeing. Furthermore, this study focused on the same psychosocial constructs as the previous study. Ten frame running athletes of local to international level completed the online survey, and through thematic analysis, the identified themes and subthemes suggested that participation has had, and does have, a positive influence on their perceived QoL and psychosocial wellbeing. The athletes reported new and enhanced life experiences through frame running, and highlighted the importance of frame running socially, with athletes describing how frame running gave them the opportunity to build and develop friendships worldwide, giving them a sense of inclusion, belonging, and enabling their social confidence, thus enhancing social development. Furthermore, athletes perceived frame running participation to have enhanced their psychological development with improved self-esteem, development of self-concept and self-confidence, and psychological wellbeing, which are reported to positively impact QoL and health outcomes. The results from the current thesis provide new insight into the impact of frame running participation on the QoL and psychosocial wellbeing of both novice and competitive athletes with CP. The combined results suggest results suggests that frame running may have a positive influence on psychological development, through self-esteem and self-concept, as well as impacting on psychological wellbeing and in turn enhancing QoL. The current research shows frame running as an enjoyable and accessible opportunity for individuals with CP to be physically active, which has the potential to contribute to an enhanced QoL and psychosocial wellbeing.