Spinal cord injury and physical activity : health, well-being and (false) hope

It is vital that people with spinal cord injury (SCI) maintain a physically active lifestyle to promote lifelong health and well-being. Yet despite these benefits, within hospital rehabilitation and upon discharge into the community, people with SCI are largely inactive. Physiotherapists in SCI rehabilitation have been identified as the healthcare professionals (HCPs) ideally placed to promote a physically active lifestyle. However, to successfully engage people with SCI in physical activity (PA), physiotherapists have to manage their hopes and expectations of SCI rehabilitation. With all this in mind, the purpose of this thesis was to explore the role of PA for people with SCI in hospital rehabilitation and in the community. The first aim of this research was to explore the barriers, benefits and facilitators of PA for people with SCI. The second aim was to examine how hopes and expectations are managed by the physiotherapists in SCI rehabilitation and by health practitioners in a community-based leisure time physical activity (LTPA) setting. The third aim was to propose improvement to LTPA promotion for people with SCI. These aims were addressed through: 1) a meta-synthesis of the qualitative literature to identify the barriers, benefits and facilitators of LTPA for people with SCI; 2) an examination of the role of LTPA in SCI rehabilitation; and 3) an exploration of experiences of participants with SCI, and their trainers in a new type of LTPA; activity-based rehabilitation (ABR). Framed by interpretivism, data were analysed by thematic analysis and dialogical narrative analysis. This thesis has made an original and significant contribution to the literature by revealing a deep understanding of factors that constrain and facilitate physically active lifestyles for people with SCI. For example, this research has uniquely demonstrated the role of pleasure in facilitating continued engagement in LTPA. Furthermore, this thesis identified that despite valuing the role of PA for people with SCI, active promotion of PA remains largely absent from physiotherapy practice. The dilemmas of promoting PA for the physiotherapists in SCI centres included a lack of training and education in health promotion and a concern over the false hope of recovery from LTPA opportunities such as ABR. To try and avoid false hope of recovery, the physiotherapists drew upon the therapeutic plot of acceptance and employed therapeutic actions to guide patients towards realistic hopes and expectations. An identification of three narrative types operating in ABR did reveal that some clients were exercising in the hope to walk again. However, the trainers were not preoccupied with acceptance as they also tried to avoid false hopes of ABR. In light of these findings there are several practical recommendations for people with SCI, HCPs such as physiotherapists, the health care system and other health practitioners in community based LTPA opportunities. These practical implications are aimed at improving PA promotion and reducing the barriers to PA for people with SCI. For example, there is a need for more effective knowledge translation across the macro, meso and micro fields. At the macro level meaningful guidelines on PA for people with SCI need to be developed and embedded into UK and Ireland policies if they are to be received and utilised by physiotherapists in SCI rehabilitation and health practitioners in the community. At the meso and micro level appropriate training and education need to be delivered to physiotherapists on PA and SCI to equip them with sufficient knowledge to prescribe and promote PA. Furthermore, the knowledge on PA shared with physiotherapists needs to include the diversity of LTPA opportunities available to people with SCI including ABR. Closer communication and engagement should be implemented at the micro level between physiotherapists in SCI centres and the health practitioners working in community initiatives such as ABR to confront issues regarding hope. In addition to knowledge translation practices, there needs to be support within the healthcare system to facilitate a physically active lifestyle for people with SCI. Equally, a more critical attitude to PA promotion is called for in terms of the possible adverse consequences.