What are the determinants of participation in life for people with spinal cord injury, and how might a knowledge of these determinants enhance rehabilitation?

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Kuipers, Willem
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Kendall, Melissa B
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This thesis presents a body of work which explores three research questions. The first two are closely related – what are the determinants of participation in life after spinal cord injury (SCI), and, how might knowledge of determinants influence the way rehabilitation is delivered? The third question was methodological in nature and was explored in parallel with the other two questions – how can participants be meaningfully engaged in rehabilitation research (in this study and more generally)? This thesis is presented as an integration of published articles and thesis chapters. Text from published articles has been incorporated into chapters five, six, seven and nine. Where necessary additional information or editing has been applied, to incorporate the articles into the thesis. Published articles have been reformatted to ensure consistent referencing and table and figure numbering throughout the thesis. A comprehensive reference list is provided at the end of the thesis. Throughout this thesis the doctoral candidate is referred to as the Principal Investigator (PI). The exception to this is the Preamble, Chapter three (Paradigms and methodologies), Chapter seven (Reflections on participant engagement), and the Epilogue. In these chapters the PI refers to herself in the first person. This change in perspective for these four sections of the thesis is because they incorporate personal critical reflection, which was central to this doctoral program. The Preamble provides the reader with insight into the personal and professional context that has shaped the PI’s approach to the doctoral program. Chapter one examines the construct of participation, with reference to the taxonomy of participation incorporated in the International Classification of Functioning, Disability and Health (ICF). Chapter two provides a literature map of articles published between 2001 and 2019, on the topic of determinants of participation after SCI. Raw data for the components of the map are provided in Appendix 2A. Determinants of interpersonal interactions and relationships after SCI was revealed as a topic that lacked a published synthesis of literature. The mapping exercise also indicated value in pursuing research on personperceived determinants of participation after SCI. It was found to be an underexplored area of scholarship with potential to influence rehabilitation practice. Chapter three provides an overview of paradigms and methodologies which shaped the PI’s approach to examining determinants of participation after SCI. It includes an examination of participatory methodologies and an explanation of the shift, ultimately to an alternative engagement methodology. Chapter four gives a brief outline of the research designs for the three studies covered in this thesis - (1) a scoping review of facilitators and impediments of interpersonal interactions and relationships after SCI; (2) an investigation of determinants of participation through examination of shared narratives of research participants, and creation of a draft framework for rehabilitation based on the examination of these narratives; and (3) a face validity study of this draft rehabilitation framework for promoting participation after SCI. Chapter five presents the results of the scoping review of the literature on the facilitators of and impediments to interpersonal interactions and relationships after SCI. Most of the contents of this chapter were published as an article in the peer reviewed journal Rehabilitation Research and Practice. This review provided a broader exploration of literature on interpersonal interactions and relationships after SCI than was provided in the literature mapping exercise (Chapter two). The scoping review relied heavily on incidental findings from studies and highlighted the need to conduct targeted research on this topic. Several ways in which the rehabilitation process can support interpersonal interactions and relationships after SCI were inferred from the review. Chapter six details the central study of this doctoral program. This study was referred to as the Queensland Spinal Cord Injuries Service (QSCIS) Opinion Leader Project. This study explored the person-perceived determinants of participation in life after SCI, through an examination of the shared narratives of four people with SCI. These determinants were assembled as a draft framework for promoting participation through rehabilitation practice (called the HEAR Framework). Much of the contents of this chapter were published as an article in the peer reviewed journal Disability and Rehabilitation. This chapter also includes links to videos which were developed collaboratively with the research participants, as a means of disseminating results of the study. Chapter seven presents the face validity study of the draft rehabilitation framework for promoting participation after SCI. This chapter also includes a link to an online explanatory video associated with this face validity study. This study was published in the journal Disability and Rehabilitation and content from that manuscript is incorporated into this chapter. Chapter eight provides key conclusions drawn from the three studies (reported in Chapters five, six and seven). Clinical implications, strengths and limitations, and opportunities for future research are briefly described. Overall contribution of these studies to the field of rehabilitation is discussed. Chapter nine is a reflection by the PI on the benefits and challenges of the methodology used in the main study (Chapter six). An appraisal of the Opinion Leader Model of engagement is presented which offers insights from participants and the PI. This chapter culminates in an opinion piece, published in the Journal of Social Inclusion, which proposes a model for reducing the subtle exploitation of participants in rehabilitation research. The Epilogue provides final reflections from the PI about this doctoral program.

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Thesis (PhD Doctorate)
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Doctor of Philosophy (PhD)
School of Human Serv & Soc Wrk
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spinal cord injury
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