Motivations for participation in a spinal cord epidural stimulation study: Perspectives of individuals with spinal cord injury and their caregivers

STUDY DESIGN: Qualitative, semi structured interviews. OBJECTIVES: Spinal cord epidural stimulation (scES) has shown promise for improving autonomic and motor function in individuals with spinal cord injury (SCI). Participation on translational studies often requires relocation, uprooting the individual and caregivers from their community. This study aimed to explore the motivations and expectations driving the decision to participate in a scES study. SETTING: Interviews were conducted at enrollment in a randomized trial evaluating scES efficacy at the Kentucky Spinal Cord Injury Research Center, University of Louisville, USA. METHODS: 23 interviews were conducted with 18 individuals with SCI (40 + 10 years old, 12 + 10 years since injury, 44% males, all cervical, ASIA Impairment Scale: 39% A, 39% B, 22% C) and 5 caregivers. Interviews were audio recorded, transcribed, and analyzed with a thematic approach. RESULTS: Four main themes emerged: gaining independence, improving function, benevolence, and other. Participants and caregivers hoped that improved function would lead to more independence—described as “a little more freedom,” “experience the world,” and to “not rely on someone.” Any change was expressed as improving the quality of life. Many managed their expectations by recognizing the impact of individual characteristics on outcomes. Even if no improvement occurred, participation felt meaningful—motivated by benevolence and a desire to advance SCI research and help others. CONCLUSIONS: People with SCI and their caregivers participate in scES research with cautious hope to gain freedom and improve quality of life through improved function. They also aim to help others through advancing science. SPONSORHIP : This work was funded by DoD (W81XWH-19-1-0734). The parent study was funded by Christopher and Dana Reeve Foundation, Leona M. & Harry B. Helmsley Charitable Trust, and Medtronic Plc for spinal cord epidural stimulation implants.