{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,2]],"date-time":"2026-04-02T16:50:58Z","timestamp":1775148658150,"version":"3.50.1"},"reference-count":100,"publisher":"American Spinal Injury Association","issue":"3","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2023]]},"abstract":"\n Background<\/jats:title>\n Nerve transfer (NT) and tendon transfer (TT) surgeries can enhance upper extremity (UE) function and independence in individuals with cervical spinal cord injury (SCI). Caregivers are needed to make this surgery possible, yet caregivers experience their own set of challenges.<\/jats:p>\n <\/jats:sec>\n \n Objectives<\/jats:title>\n This comparative study explored the perioperative and nonoperative experiences of caregivers of individuals with cervical SCI, focusing on daily life activities, burden, and mental health.<\/jats:p>\n <\/jats:sec>\n \n Methods<\/jats:title>\n Caregivers of individuals with cervical SCI were recruited and grouped by treatment plan for the person with SCI: (1) no surgery (NS), (2) TT surgery, and (3) NT surgery. Semistructured interviews were conducted at baseline\/preoperative, early follow-up\/postoperative, and late follow-up\/postoperative. Caregivers were asked about their daily life, mental health, and challenges related to caregiving. Interviews were audio recorded, transcribed verbatim, and analyzed using thematic analysis. Quantitative, single-item standardized burden score (0-100) data were collected at each timepoint.<\/jats:p>\n <\/jats:sec>\n \n Results<\/jats:title>\n Participants included 23 caregivers (18 family members, 4 friends, 1 hired professional). The surgeries often brought hope and motivation for caregivers. Caregivers reported increased burden immediately following surgery (less for the NT compared to TT subgroup) yet no long-term changes in the amount and type of care they provided. NS caregivers discussed social isolation, relationship dysfunction, and everyday challenges.<\/jats:p>\n <\/jats:sec>\n \n Conclusion<\/jats:title>\n Health care providers should consider the changing needs of SCI caregivers during perioperative rehabilitation. As part of the shared surgical decision-making approach, providers should educate caregivers about the postoperative process and the extent and potential variability of short- and long-term care needs.<\/jats:p>\n <\/jats:sec>","DOI":"10.46292\/sci22-00063","type":"journal-article","created":{"date-parts":[[2023,8,17]],"date-time":"2023-08-17T04:44:21Z","timestamp":1692247461000},"page":"58-70","source":"Crossref","is-referenced-by-count":1,"title":["Caregiving for People With Spinal Cord Injury Undergoing Upper Extremity Reconstructive Surgery: A Prospective Exploration of Lived Experiences, Perioperative Care, and Change Across Time"],"prefix":"10.46292","volume":"29","author":[{"given":"Rachel Heeb","family":"Desai","sequence":"first","affiliation":[{"name":"Program in Occupational Therapy, Washington University School of Medicine, St. Louis, Missouri"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Allison","family":"L'Hotta","sequence":"additional","affiliation":[{"name":"Program in Occupational Therapy, Washington University School of Medicine, St. Louis, Missouri"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Carie","family":"Kennedy","sequence":"additional","affiliation":[{"name":"Division of Plastic & Reconstructive Surgery, Department of Surgery, Washington University School of Medicine, St. Louis, Missouri"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Aimee S.","family":"James","sequence":"additional","affiliation":[{"name":"Division of Public Health Sciences, Department of Surgery, Washington University School of Medicine, St. Louis, Missouri"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Katherine","family":"Stenson","sequence":"additional","affiliation":[{"name":"Saint Louis Veterans\u2019 Healthcare System, St. Louis, Missouri"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Catherine","family":"Curtin","sequence":"additional","affiliation":[{"name":"Palo Alto Veterans\u2019 Healthcare System, Palo Alto, California"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Doug","family":"Ota","sequence":"additional","affiliation":[{"name":"Palo Alto Veterans\u2019 Healthcare System, Palo Alto, California"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Deborah","family":"Kenney","sequence":"additional","affiliation":[{"name":"Department of Orthopedic Surgery, Stanford University, Palo Alto, California"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Katharine","family":"Tam","sequence":"additional","affiliation":[{"name":"Saint Louis Veterans\u2019 Healthcare System, St. Louis, Missouri"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Christine","family":"Novak","sequence":"additional","affiliation":[{"name":"Division of Plastic & Reconstructive Surgery, University of Toronto, Toronto, Ontario, Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ida","family":"Fox","sequence":"additional","affiliation":[{"name":"Division of Plastic & Reconstructive Surgery, Department of Surgery, Washington University School of Medicine, St. Louis, Missouri"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"25425","reference":[{"issue":"10","key":"i1945-5763-29-3-58-b1","series-title":"J Neurotrauma","first-page":"1355","article-title":"A global perspective on spinal cord injury epidemiology","volume":"21","author":"Ackery\n A","year":"2004","unstructured":"Ackery\n A\n , TatorC, KrassioukovA. A global perspective on spinal cord injury epidemiology. J Neurotrauma. 2004;21(10):1355-1370."},{"key":"i1945-5763-29-3-58-b2","article-title":"SCI Facts and Figures at a Glance","author":"National Spinal Cord Injury Statistical Center","unstructured":"National Spinal Cord Injury Statistical Center\n . SCI Facts and Figures at a Glance. https:\/\/www.nscisc.uab.edu\/Public\/Facts%20and%20Figures%202020.pdf"},{"key":"i1945-5763-29-3-58-b3","article-title":"Long Term Caregivers: For Better and for Worse","author":"Craig Hospital Spinal Cord Injury Resource Library","unstructured":"Craig Hospital Spinal Cord Injury Resource Library\n . Long Term Caregivers: For Better and for Worse. https:\/\/craighospital.org\/resources\/long-term-caregivers-for-better-and-for-worse"},{"key":"i1945-5763-29-3-58-b4","article-title":"Information about Caring for Someone with an SCI","author":"United Spinal Association","unstructured":"United Spinal Association\n . 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J Brachial Plexus Peripheral Nerve Inj. 2015;10(01):e34-e42."},{"issue":"10","key":"i1945-5763-29-3-58-b10","series-title":"Spinal Cord","first-page":"1088","article-title":"Identifying barriers to upper extremity reconstruction in tetraplegia: A systematic scoping review","volume":"59","author":"Yeung\n C","year":"2021","unstructured":"Yeung\n C\n , SalimS, FoxIK, NovakCB, DenglerJ. Identifying barriers to upper extremity reconstruction in tetraplegia: A systematic scoping review. Spinal Cord. 2021;59(10):1088-1095."},{"issue":"7","key":"i1945-5763-29-3-58-b11","series-title":"J Hand Surg","first-page":"621","article-title":"Evaluation of functional independence in cervical spinal cord injury: Implications for surgery to restore upper limb function","volume":"46","author":"Dengler\n J","year":"2021","unstructured":"Dengler\n J\n , MehraM, SteevesJD, et al.\n Evaluation of functional independence in cervical spinal cord injury: Implications for surgery to restore upper limb function. 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