Motivations and expectations for spinal cord epidural stimulation study participation: perspectives from individuals with spinal cord injury and 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 in translational studies often requires relocation, uprooting the indivi...
| Publicado en: | Spinal Cord Vol. 64; no. 5; pp. 423 - 431 |
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| Autores principales: | , , , , , , |
| Formato: | research tables/charts Journal Article |
| Publicado: |
Springer Nature
May2026
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=193628214&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 193628214 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 13624393 DZQ jtl: Spinal Cord issn: 13624393 maglogo: Y pubinfo: dt: May2026 vid: 64 iid: 5 pid: 2579 pub: Springer Nature place: Dordrecht, <Blank> artinfo: ui: 193628214 193628214 193628214 10.1038/s41393-026-01197-y 193628214 ppf: 423 ppct: 8 formats: tig: atl: Motivations and expectations for spinal cord epidural stimulation study participation: perspectives from individuals with spinal cord injury and caregivers. aug: au: Alvarez-Madrid, Elsa Herrity, April Rich, Carla Brothers, Kyle Harkema, Susan Hubscher, Charles Ugiliweneza, Beatrice affil: https://ror.org/01ckdn478 Kentucky Spinal Cord Injury Research Center, University of Louisville, Louisville, KY, USA sug: subj: Spinal Cord Injuries Therapy Spinal Cord Stimulation Epidural Space Motivation Research Subject Recruitment Caregivers Psychosocial Factors Attitude to Medical Treatment Human Funding Source Kentucky Academic Medical Centers Kentucky Male Female Adult Middle Age Secondary Analysis Comparative Studies Descriptive Statistics Qualitative Studies Semi-Structured Interview Thematic Analysis Data Analysis Software Patient Attitudes Caregiver Attitudes Adult: 19-44 years Middle Aged: 45-64 years Male Female ab: 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 in translational studies often requires relocation, uprooting the individual and caregivers from their community. Recognizing this burden, this study aimed to explore the motivations and expectations driving the decision to participate in a scES study. Setting: Kentucky Spinal Cord Injury Research Center, University of Louisville, USA. Methods: 23 interviews were conducted at enrollment in a randomized trial evaluating scES efficacy. Respondents were 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 optimism to gain freedom and improve quality of life through improved function. They also aim to help others through advancing science. Sponsorship: This work was funded by Department of Defense (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. pubtype: Academic Journal doctype: research tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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