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

Top Spinal Cord Inj Rehabil, 2023 · DOI: 10.46292/sci22-00063 · Published: July 1, 2023

Spinal Cord Injury Surgery Social Support

Simple Explanation

This study explores the experiences of caregivers for individuals with cervical spinal cord injury (SCI) undergoing upper extremity (UE) reconstructive surgeries like nerve transfer (NT) and tendon transfer (TT). These surgeries aim to improve hand and arm function, but caregivers play a crucial role and face unique challenges. The research compares caregivers of those undergoing NT surgery, TT surgery, and a nonsurgical group (NS) to understand the impact of these surgeries on their daily lives, mental health, and burden of care. The study found that while surgeries brought hope, caregivers often experienced increased burden immediately after surgery, although long-term changes in care were minimal. Nonsurgical caregivers reported social isolation and relationship challenges.

Study Duration

March 2018 to August 2021

Participants

23 caregivers (18 family members, 4 friends, 1 hired professional)

Evidence Level

Not specified

Key Findings

1
The decision to pursue nerve or tendon transfer surgery was associated with a sense of hope and anticipation among caregivers, who looked forward to potential gains in the independence and movement of the person with SCI.
2
Most caregivers reported an initial increase in the amount of care provided following surgery, primarily related to wound care and assistance with basic activities; however, the level of care typically returned to baseline within a few weeks to months.
3
Despite functional improvements observed in individuals with SCI after surgery, most caregivers reported no substantial long-term changes in the amount or type of care they provided 6 to 24 months post-surgery.

Research Summary

This study investigated the experiences of caregivers of individuals with cervical SCI undergoing upper extremity reconstructive surgery, comparing them to caregivers of individuals not undergoing surgery. Qualitative data revealed that surgery often brought hope and motivation, with short-term increases in caregiving demands following surgery, but generally no major long-term changes in the level of care provided. The study highlights the importance of healthcare providers communicating with caregivers about the postoperative process and extent of care needs to manage expectations and promote caregiver well-being.

Practical Implications

Enhanced Communication

Surgeons and rehabilitation professionals need to explicitly communicate with caregivers regarding the postoperative process and care needs as part of shared surgical decision-making.

Realistic Expectations

Caregivers need realistic expectations regarding healing timelines and functional gains, with providers encouraging adherence to therapy recommendations and home exercises.

Empowering Independence

Caregivers need guidance on tapering their level of assistance to foster increased functional independence in individuals with SCI following rehabilitation.

Study Limitations

1
The complexity of caregiver burden and social relationships makes it difficult to elicit accurate experiences.
2
The results may underrepresent the burden experienced by caregivers due to feelings of guilt or responsibility.
3
The variability in experiences made it challenging to compare surgical experiences, and the single-item burden score may not fully capture the construct of burden.

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