Nothing to lose: a phenomenological study of upper limb nerve transfer surgery for individuals with tetraplegia

Abstract

Purpose For individuals with tetraplegia, regaining upper limb function forms the highest priority for improving quality of life. Use of nerve transfers to reconstruct upper limb function is increasing, however little is known about individual’s decision to have and experience of the surgery and associated rehabilitation outcomes. This qualitative study aimed to understand the experience of surgery on the lives of individuals with tetraplegia 18 months post-surgery. Method In-depth, semi-structured interviews were conducted with five purposively selected individuals who have undergone upper limb nerve transfers at a metropolitan health service, Melbourne, Australia, specializing in spinal cord injury rehabilitation. Collaizi’s phenomenological framework guided data analysis, resulting in an essence statement describing the individuals’ experience. Results An essence statement comprising three themes; Deciding on Surgery, Facing Challenges: Surgery to Recovery and Evaluating Surgical Outcomes, was developed. Conclusion The study suggests that for individuals with tetraplegia, hope to regain lost upper limb function forms a core consideration in the decision to have surgery. For clinicians supporting patient’s decision, balancing hope with the realities of surgery is important. Even small changes in upper limb function had an important influence on participant’s confidence in social situations through enhanced participation in a range of everyday activities. IMPLICATIONS FOR REHABILITATION In making a decision to have surgery, individuals with tetraplegia benefit from two way discussions with the healthcare team and others who have already undergone surgery. Healthcare teams need to help prepare individuals for the challenges of surgery including: expectations of pain, hospital stay, initial loss of independence and the time it may take to see re-innervation of target muscles and subsequent functional changes. Surgery should be routinely considered as individuals’ report that even small changes in upper limb function positively increases participation in everyday tasks and confidence in social situations. When evaluating changes in upper limb function, patient-centered measures should be used.