The Lived Experience of Pain Following a Spinal Cord Injury: A Qualitative Thematic Analysis

Objective(s): To synthesize the findings of qualitative studies examining the lived experience of pain following spinal cord injury (SCI).

Data Sources: CINAHL, Cochrane, Medline, ProQuest, PsychInfo, and Web of Science were searched from 1980 until 2021, excluding studies not available in English. Reference lists of selected studies were hand searched to source additional articles.

Study Selection: Eligible qualitative studies focused on the lived experience of pain, as reported by adult individuals with SCI. Only studies including the first-person narrative of living with a SCI were included. A total of 427 articles were screened, of which 68 articles were read in full, resulting in a final selection of 19 studies based on inclusion criteria.

Data Extraction: Using qualitative thematic synthesis methodology, data (author interpretations and quotes) from each included article were coded line-by-line to develop descriptive and analytical themes by two investigators. Characteristics of the studies and sample participants were also extracted.

Data Synthesis: Three overarching themes emerged with respect to the lived experience of pain: (1) characteristics of pain (i.e., augmenters, descriptors, distribution, onset, patterns, type) (2) physical and psychosocial impacts of pain (e.g., activities of daily living, interpersonal, or vocational consequences), and (3) pain management modalities (i.e., pharmacological and non-pharmacological interventions). As pain is a subjective experience, participants outlined varying descriptions of the nature of pain. Despite this variation, pain was reported as physically, psychologically and socially debilitating, impacting everyday life. Pain management was identified as a priority, although participants felt that their pain was often not being adequately managed.

Conclusions: The findings from this study uncovered the unique experience of pain among individuals’ following SCI, which may be useful to health care professionals and family members. Importance should be placed on listening to the patient’s experience, shifting the focus from pain relief to needs-based, comprehensive pain management.

Author(s) Disclosures: The authors have no conflicts to disclose.