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An evaluation of an adapted yoga program for people with a spinal cord injury: A journey of reconnection with the self Lisa Maree Bidgood Bach. Occ. Ther. Associate Professor Julie Pryor Associate Professor Murray Fisher Submitted in fulfilment of the requirements for the degree of Master of Philosophy Faculty of Medicine and Health University of Sydney 2019 Candidate’s Statement This is to certify that to the best of my knowledge; the content of this thesis is my own work. This thesis has not been submitted for any degree or other purposes. I certify that the intellectual content of this thesis is the product of my own work and that all the assistance received in preparing this thesis and sources have been acknowledged. Signature Name Lisa Bidgood i Supervisors’ Statement As supervisors of Lisa Maree Bidgood’s higher research degree, we certify that this thesis entitled ‘An evaluation of an adapted yoga program for people with a spinal cord injury: A journey of reconnection with the self’ is sufficiently well prepared to be examined for the degree of Master of Philosophy. Associate Professor Murray J Fisher Sydney Nursing School, The University of Sydney Nursing Scholar in Residence, Royal Rehab, Sydney Signature: Date: 6/8/2019 Clinical Associate Professor Julie Pryor Nursing Research and Development Leader, Royal Rehab, Sydney Sydney Nursing School, the University of Sydney Signature: Date: 6/8/2019 ii Acknowledgement In 2011 I found myself reflecting on a conversation with a client whilst working as an Occupational Therapist, who wanted to practice yoga again after a traumatic accident. This young man had sustained considerable physical and cognitive impairments. For some time I deliberated as to how I could possibly make this come to fruition given my experience and knowledge of my chosen physical yoga practices at the time (Bikram and Vinyasa). And this is where my journey started. It takes a village to raise a child, and a similar amount of loving kindness, attention and intention to create a thesis. I would like to acknowledge ‘the village’ of people who helped inspire me along this path, beginning with Matthew Sanford. Matthew had the genius and lived experience to recognise the importance of human variation (and the subtle body) in yoga. His dedication in educating others through his words and actions changed the way I saw, taught and practised yoga. Along with my gratitude for Matthew, I’d like to thank all my yoga students. It was whilst I was teaching adapted yoga classes, that I came to see the benefits of the practice and the difference it was making. I wanted to learn more and set off down the path of formal research. From the bottom of my heart, I thank them for sharing their stories, but most importantly, allowing me to shape these theories and ideas (and test them out on so many different bodies!). I am grateful to those who were involved in the production of this study and making my love of yoga and disability available to a wider audience. Particularly Julie Pryor and Murray Fisher who gave their time and knowledge; and who encouraged me along when I wanted to give up. My gratitude extends to all the yoga teachers, past and present, who have redefined and transformed my understanding and practice of yoga. Throughout this process of creation I have been absent, both physically and mentally from my home and home life. A heartfelt thank you to my friends, family and partner, Styli, for their patience. Lokah Samastah Sukhino Bhavantu 'May all beings be happy and free, and may the thoughts, words and actions of my own life contribute in some way to the happiness and freedom for all.' Sanskrit Mantra iii An evaluation of an adapted yoga program for people with a spinal cord injury: A journey of reconnection with the self Abstract Background Rooted in Indian philosophy and spiritual practice, yoga is considered a tool to quieten the mind with the view of achieving union of mind, body and spirit. The concept of what constitutes yoga is broadening as more people become involved and practice, however, regardless of style, yoga combines specific physical postures (asana), breathing styles (pranayama), meditation techniques (dhyana) and philosophy. Yoga has grown in prominence as a wellbeing-enhancing practice and is seen as an adjunct to prevent and treat health conditions. As a holistic practice, yoga can be readily adapted to meet the physical limitations of individuals and shows promise as a therapeutic intervention. The specifics of the relationship between a yoga practice (and all its interrelated components) and health are still being explored. Despite the growing literature about yoga, health and wellbeing, the area of yoga and spinal cord injury (SCI) is under researched. The paucity of the literature on yoga with SCI indicated the review of literature needed to include other sudden onset, non-generative neurological conditions, such as traumatic brain injury (TBI) and stroke to synthesise evidence of yoga interventions. Whilst some similarities were noted in the reported outcomes of the 20 papers on yoga with people who have SCI, TBI or stroke, what it was about the program that made them ‘work’ (i.e. how, why and under what conditions a yoga program is most effective) remains unclear. This thesis reports on an exploratory qualitative research study, using principles of realist evaluation (Pawson & Tilley, 1997), conducted with people who have a SCI who practise yoga. A realist hypothesis, called an initial rough program iv theory, was developed prior to the commencement of the program to build an explanatory account of how the program would work, with whom and under what circumstances. The realist evaluation framework provided guidance to evaluate, develop and refine the program theories underpinning an adapted yoga program for people with SCI. Aim The aim of this exploratory evaluation was to examine how, why and in which contexts an adaptive yoga program impacts people with SCI and to refine the initial rough program theory for an adaptive yoga program for people with SCI. Method A convenience sample of 13 individuals with SCI who participated in an adapted yoga program, which included a mixture of people with quadriplegia (n=7) and paraplegia (n=6), was used. Data consisted of two semi-structured interviews. The first interview (n=13) explored the participants’ perceptions, experiences and reported outcomes of the yoga program. The second interview (n=11) examined reasoning, choices, and motivation behind their participation: ‘what’ works, for ‘whom’ and ‘why’. The integrative literature review and a broader search of the literature resulted in 12 propositions. Using an expanded scheme of Pawson and Tilley’s (1997) propositions of context, mechanism and outcome, resources and reasoning were separated in the framework of mechanisms. By focusing on identified outcomes in the data, content analysis enabled identification of how different people in different social, organisational and cultural settings respond differently to the same experience. This process identified mechanisms (M) most associated with particular outcomes (O). Data was then further examined to establish any relating context/s (C) and resources (R). This systematic approach identified likely and conjectured logical relationships (either positive or negative). v Reiterations of content analysis and mapping of connections allowed for greater interaction between researchers and increased the opportunity for interpretative insights leading to a more rigorous analysis and inspired higher levels of conceptualisation. Results The study generated original findings which suggest an adapted yoga program provides a number of meaningful physical, psychological and social benefits for people with a SCI. Similar to findings of the integrative review, this study found yoga is beneficial for decreasing pain, improving emotional health (reduced stress and relaxation), increasing activity and participation, improving sleep and increasing self-awareness. In addition to this, data contained reports of decreased muscle spasm. This study found unanticipated mechanisms not considered in the initial draft program theory. Before buying into the program these included a willingness to give yoga a try, valuing being on the floor, trusting the teacher, accepting help, discovering the power of breath, rediscovering the power of touch and realising my body can do this. This initial experience at the commencement of the program, positioned the participant as an ‘outsider’, unfamiliar with yoga and cautious with regard to outcomes. Consistent experiences of beneficial physical, mental and emotional effects led to consolidation of thoughts about yoga: realising I have some control over symptoms, buying into yoga and incorporating yoga in to my life. This solidified motivational changes to become an ‘insider’ of the adapted yoga program. A number of relationships were identified with the emergence of seven key features of the adapted yoga program for people with SCI. These features, which were recurring in the data or played a part in the positive feedback loops, were practising yoga out of the wheelchair, inclusion of all four components of yoga (asana, pranayama, meditation and philosophy), use of props, availability in class of assistants with specialist training, teacher with vi specialist training and extensive experience, group classes and the use of essential oils such as lavender. Discussion A realist evaluation uncovers the experience of an individual engaged in an intervention. In particular, the implications of this thesis and its results can be synthesised into two key areas: methodological approaches for complex interventions such as a yoga practice for people with a SCI and improved reporting of underlying causative actions within a yoga intervention. The extensive and varied components of a yoga intervention (asana, pranayama, meditation and philosophical teachings) indicate yoga is a complex intervention. A realist evaluation uncovers the full experience of an individual engaged in a complex intervention rather than only measuring expected outcomes.

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