The functioning of social support in long-term prevention after spinal cord injury. A qualitative study

Background The impact of social support on the long-term condition after a spinal cord injury (SCI) varies across studies mainly involving self-report questionnaires. Objective We aimed to establish the common factors associated with social support leading individuals with an SCI to the effective prevention of secondary complications, including via adherence to medical follow-up. Methods Inclusion criteria were a history of acquired SCI of any etiology, wheelchair use, and age ≥ 18 years at the time of the study. Participants should have completed their initial rehabilitation program in France ≥ 1 year earlier and were also enrolled according to 2 related study variables: routine medical follow-up (patients were or were not followed up) and the medically supervised reporting of a pressure ulcer after the initial rehabilitation session (0 or ≥ 1 pressure ulcers). We performed a preparatory quantitative and qualitative literature review to identify factors affecting long-term follow-up after SCI, then adopted a narrative design with semi-structured interviews, transcribed and analyzed progressively by using qualitative analysis software. Results We included 32 participants. We categorized our results based on the knowledge, attitudes, beliefs and practices of participants with respect to pressure ulcer prevention and long-term medical follow-up. Our narrative approach allowed us to identify 3 main domains relevant to social support: reciprocity, self-management and timing related to social support. Conclusions Our study showed social support as a dynamic process, a reciprocal phenomenon evolving in variations over time. These findings should be central to short- and long-term therapeutic education programs for patients and for people providing social support. Effective changes should also be implemented through the concept of the Learning Health System.