Quality of life from the patient perspective at the end of the first rehabilitation after the onset of spinal cord injury/disorder – A qualitative interview-based study

Abstract

Context At present, there is a lack of information concerning patients’ perspectives on their quality of life (QoL) after a recently acquired spinal cord injury/disorder (SCI/D). Objective To explore patients’ perspectives on their QoL during their first inpatient rehabilitation after the onset of SCI/D. Methods Qualitative study. Semi-structured face-to-face interviews were conducted with 20 participants aged 18 years or older at least three months after the onset of SCI/D and two weeks before they were discharged from their first rehabilitation. Audio-recorded interviews were transcribed and analyzed according to the thematic content analysis. Interviewees rated their QoL with the SCI QoL data set. Results The interviewees judged their satisfaction with life as a whole, their physical and mental health, as relatively high with values between six and eight (with 10 meaning complete satisfaction). They highlighted social aspects, health topics, and the experience of autonomy as relevant to their concept of QoL. The aspects that positively influenced QoL included the level of well-being in the current social and institutional environment, the increased level of energy, strength, and autonomy in daily life, and an improved mental state derived from general positive personal attitudes. In contrast, the social restrictions during the COVID-19 pandemic, physical issues including pain, a lack of progress associated with psychological dissatisfaction, and limitations in personal independence decreased patients’ QoL. Conclusion Since the interviewees described different aspects from the areas of social, health and autonomy as important for their QoL, exploring and addressing these areas should be used to achieve an individualized first rehabilitation.