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Abstract
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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 32 semi-structured interviews, transcribed and analyzed progressively by using qualitative analysis software.
RESULTS: We included 42 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.
Language: en |