Return to work : exploring paths toward work after spinal cord injury and designing a rehabilitation intervention

Abstract

Introduction: Return to work (RTW) after spinal cord injury (SCI) often involves a complex and extended process for the person, due to consequences of the injury. There is limited evidence on how to support a person with SCI during the RTW process, and employment rates are low in Sweden, as well as internationally. It is important when developing a rehabilitation intervention for RTW after SCI, that the intervention derives from a contextually relevant evidence base, as well as from collaboration with persons with SCI.

Aim: The overall aim was to explore and generate knowledge about RTW for adults with SCI, in order to develop and evaluate the design and feasibility of a complex intervention that can serve as a complement to current RTW systems.

Methods: This thesis draws on the Medical Research Council’s (MRC) guidance for developing and evaluating complex interventions. Study I was a follow-up study in which narrative interviews and participant observations were used to explore experiences of RTW in the context of everyday life, 7-11 years after SCI. In study II, a participatory approach drawing on photovoice methods was used to explore experiences of barriers and possibilities in RTW among working adults with SCI. In study III, constructive grounded theory and focus group interviews were used to generate knowledge on how professional stakeholders organize and experience the RTW process for the person with SCI. The findings in studies I-III in combination with research in the field and theoretical resources, constituted the evidence base for modelling ReWork-SCI, a person-centred, structured, and coordinated intervention process for RTW after SCI. The feasibility of ReWork-SCI and the study design for evaluating ReWork-SCI, with regard to adherence, acceptability, recruitment, retention, and use of outcome measures, was explored in study IV.

Findings: Studies I-III illustrate that the RTW process was experienced as fragmented by the person with SCI and difficult to navigate for the professional stakeholders. Moreover, findings show how the RTW process was situated in a person’s everyday life. Further, tensions between intentions for fair support and possibilities to enable such, meant challenges in when and how a RTW process could be initiated and realized. Study IV shows that ReWork-SCI was feasible although modifications to the intervention, and the study design was necessary prior to a full-scale trial.

Conclusion: This thesis adds to the understanding of complexities in the RTW process after SCI. Supporting the person in untangling problematic dimensions of how RTW is situated in everyday life is a critical outset in the process. This thesis shows how a RTW coordinator based in the SCI rehabilitation team can collaborate with the person and provide coordination between stakeholders throughout the RTW process and how ReWork-SCI has the potential to guide when and how a RTW process after SCI can be made possible.