When Movement Moves: Evaluating the impact on quality of life, health and participation after 16-week attendance in the recreational Team Twin programme for people with severe disabilities

Background Individuals with disabilities often face a range of challenges in maintaining and improving their physical and mental health throughout their lives. Compared to those without disabilities, they are more likely to be more isolated and have fewer leisure participation opportunities, leading to experiencing physical, mental and social health issues such as pain, fatigue, poor sleep quality, cardiovascular diseases, social isolation and exclusion, depression, poor emotional well-being, stigma and negative attitudes from others. These issues become even more noticeable according to the level of disability severity. Collectively, these factors can lead to mental health issues, poor physical health and ultimately low quality of life. The PhD thesis was a part of the ‘When Movement Moves’ project, which aims to evaluate the impact on quality of life, health and participation-related benefits of two pre-existing programmes accommodating people with severe functional limitation who are moved by volunteers in special-designed running and cycling equipment. This PhD in particular investigated one of the two pre-existing programmes – ‘Team Twin – we run together’.Aim The purpose of the PhD project was to investigate how participation in the inclusive community-based assisted running activity – Team Twin – influences the quality of life and health aspects of individuals with severe disabilities, including physiological, mental and social dimensions, and how participation in the programme is perceived and experienced, throughout four interrelated studies.MethodsTo assess the Team Twin programme and structure the evaluation, we developed a multi-method 16- week study design following the programme theory we elaborated in collaboration with stakeholders, providers and participants (Study 1). When evaluating the effectiveness of the programme, participants were invited to complete self-reported questionnaires at baseline and follow-up. The questionnaires encompassed the main outcome of quality of life, assessed using the Cantril Ladder, and secondary health outcomes in relation to domains of physical, mental and social health outcomes, including participationrelated aspects of the programme at the follow-up questionnaire. Additionally, a clinical examination was conducted at baseline and follow-up to assess objective physical health outcomes. Descriptive statistics were used to describe the sample and participation-related aspects, while mixed linear regressions analysis was conducted to assess the change from baseline to follow-up to account for the longitudinal design and paired data (Paper II). The potential physical response from the activity was assessed using commercial bio-trackers measuring heart rate responses during the activity and interpreted as time spent in intensity zones from heart rate reserve estimations (Paper III). A qualitative inquiry was conducted throughout the study period by conducting seven observations allocated across two local clubs and one race, interviewing a sub-sample of six handiathletes, and conducting focus group interviews with nine relatives spread over two interviews. A thematic analysis approach was used to analyse and interpret the empirical data (Paper IV). Results The evaluation included a total of 21 handiathletes from six distinct local clubs distributed across Denmark. After 16 weeks of participation, we found no improvement in the main outcome, the quality of life (p=0.42). However, sub-group analysis revealed a significant improvement among adherent participants (p=0.05). Additionally, self-reported biopsychosocial health outcomes remained insignificantly unchanged, with a minor positive trend observed in all outcomes at follow-up. Similarly, objective physical health outcomes did not exhibit any significant improvements (Paper II). These findings from the clinical examination were underlined by the findings from heart rate responses during the activity, suggesting the intensity remained at a sedentary level (80% of the total time), and a declining-over-time pattern was observed in the heart rate response (Paper III).Findings from the participation-related aspects revealed that the majority of handiathletes experienced quality elements of participation (autonomy, belongingness, engagement, mastery and meaning) when participating in Team Twin. These aspects were fostered by an overarching condition aligning with the programme and social conditions; cultivating the inclusive culture, encompassing three condition that fostered and one condition that inhibited the quality experiences: 1) team perception, 2) societal visibility, 3) a disability-free environment and 4) balancing inclusion and voluntariness (Paper IV). Moreover, findings suggested that the handiathletes experienced a sense of acceptance and equality which not only transformed how others viewed them but also enhanced their self-concept beyond their disabilities. They felt liberated from both physical and social constraints, leading to a newfound sense of personal power and affecting their motivation to engage in other activities and be more independent.ConclusionParticipation in the 16-weeks inclusive community based recreative running program - Team Twin - did not reveal any effectiveness on the selected quality of life and health outcomes. However, the subjective assessment suggested that the program generated multiple aspects of quality participation elements. Moreover, their participation was perceived to be beneficial in vital aspects related to core quality of life domains for people with disabilities.