Abstract
OBJECTIVE: To describe and enumerate the prevalence of concerns and stressors experienced by individuals with spinal cord injury (SCI) during subacute injury. DESIGN: A within-arm (intervention only) qualitative analysis of psychotherapy notes obtained during the 12-week active phase of a randomized controlled trial of tele-cognitive behavioral therapy (tele-CBT). Therapy sessions were conducted between January 2019 and February 2023. SETTING: Community setting. PARTICIPANTS: Twenty-two individuals (men: n=14; women: n=8) were included in the analyses; the average age was 44.8 years (SD=18.1) and the mean injury duration was 103.14 days (SD=78.3). INTERVENTIONS: Participants engaged in 10 (45-60min) CBT sessions with a licensed psychologist; CBT sessions were administered via Apple FaceTime weekly for 8 weeks and then biweekly for 4 weeks, for a total of 10 sessions over 12 weeks. MAIN OUTCOME MEASURES: The analyses presented here differ from the main planned analyses to gauge the efficacy of intervention in the study. Psychotherapy notes were qualitatively coded to identify participant endorsements of negative life events, general and SCI-related complaints, and stressors; these inventoried concerns were hierarchically organized into larger subthemes and themes, following Bronfenbrenner's and McLeroy's socioecological framework. RESULTS: Thematically, concerns articulated by individuals with SCI were intrapersonal (cognitive/emotional, somatic, and behavioral), interpersonal (relationships with significant others, with friends and family, with paid caregivers, and with medical providers as well as pet-related concerns), and environmental (access to health care and insurance, accessibility of public spaces, supportive housing, and stigma and discrimination). Compared with research that has enumerated domains of importance among individuals living with SCI, concerns around loss of independence and care burden were more frequently endorsed while bladder/bowel dysfunction and sexual/reproductive concerns were articulated only by a minority of participants. Indeed, across all participants, the most frequently endorsed concerns included pain (n=16; 72.7%), loss of independence (n=12; 54.6%), poor sleep (n=11; 50.0%), and self-perceived care burden (n=11; 50.0%). CONCLUSIONS: Individuals with SCI experience a broad range of concerns across multiple ecological levels, some of which are anticipatory (eg, worry about fulfilling duties, once returned to work) and are not SCI-specific (eg, improving health behaviors, managing grief after bereavement). Multimodal and multidisciplinary approaches are needed to provide effective interventions to improve the quality of life.