Liminality and decision making for upper limb surgery in tetraplegia: a grounded theory

To explore, from the perspective of the person with tetraplegia, the issues that influenced decision making about upper limb surgery and develop a conceptual framework describing the decision making process.

Purposive and theoretical sampling of 22 people with tetraplegia, followed by interviews. Ten people had upper limb surgery and 12 had not. Verbatim transcripts were analyzed with constructivist grounded theory.

Participants responded to the offer of surgery in one of three ways: yes, let me have it; no thanks; or possibly. Many influences on the decision about surgery had a temporal element, such as hope for the cure or recovery from SCI, inadequate physical or social supports while rehabilitating, life roles and goals, and the avoidance of re-hospitalization. The conceptual framework illustrated that many participants entered a liminal state within which they required a stimulus to review their decision about upper limb surgery.

Decision making is a temporal process, and for some the process was a prolonged and liminal one. Therefore, multiple offers for surgery are required to allow for changing thoughts and circumstances throughout an individual's lifetime. Flexibility with regard to timing for surgery and type of rehabilitation may increase the uptake, especially for women.

• Multiple offers for upper limb surgery are required throughout an individual's lifetime to account for changing thoughts and priorities. • Identification of the type of support required (informational, emotional) may assist in decreasing the time taken to make the decision about surgery. • Flexibility in surgical and rehabilitation options, especially for women, may increase the uptake of surgery.