Caregiving for People With Spinal Cord Injury Undergoing Upper Extremity Reconstructive Surgery: A Prospective Exploration of Lived Experiences, Perioperative Care, and Change Across Time

Abstract

Background 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. Objectives 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. Methods 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. Results 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. Conclusion 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.