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

Abstract

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.

Keywords: Grounded theory; Interview; Reciprocity; Self-management; Social support; Spinal cord injury; Temporality.