Scientific evidence indicates the presence of secondary conditions (such as pressure ulcers) after spinal cord injury (SCI). Treatment methods focusing on the management of paraplegia and tetraplegia include systematic preventive follow-up. These advances have significantly improved the functional and vital prognosis of people with SCI, but some people may not have access to these specialized organizations or may not adhere closely to this medicalized vision. We used a narrative approach to explore the perceptions of people with SCI to better understand their adherence to follow-up.

We aimed to determine the “common denominators” that lead to adherence or non-adherence to long-term follow-up after SCI.

People with SCI who had completed their first rehabilitation period for > 1 year were included with regard to 2 variables: 1) an actual medical follow-up or not and 2) a history of pressure ulcer or not. A review of the literature was used as preparation for semi-directive interviews, which were prospectively analysed by using qualitative analysis software. Thematic saturation was reached at 28 interviews, and 32 interviews were ultimately completed.

Three main areas concerning participants’ perceptions emerged: people's readiness, appropriation and modulation of the systematic follow-up. We developed a broad conceptual framework representing follow-up and the promotion of the long-term health of people with SCI from their perspectives.

The medical environment should ensure that people with SCI are ready to actively consider the implementation of prevention strategies and should take into account their ability to establish their own truth, to integrate various life stages after SCI and to negotiate systematic follow-up. The implementation of data about functioning should be conducted using the concept of the Learning Health System.