Residence and quality of life determinants for adults with tetraplegia of traumatic spinal cord injury etiology

Study design: Cross-sectional analysis of individual interviews with a convenience sample of persons living with tetraplegia. Objectives: To describe patterns of residence among persons living with tetraplegia following discharge from initial acute medical care after spinal cord injury, decision-making process for each residence move and quality of life determinants at different residence types. Setting: California and Minnesota, United States. Methods: A total of 22 adults with traumatic spinal cord injury tetraplegia were interviewed about their residence histories, the residence decision-making process for each move, and positive and negative features at each residence at which they had lived. Results: Information, money, insurance, accessibility, intimate relationships and personal assistants had the strongest influence over residence location, with insufficient information and finances demonstrating particularly strong influences. Participants frequently viewed parents' homes as an 'only option,' 'place of refuge' or 'stunting' environment. They viewed own homes as 'only options' or ways to achieve quality of life improvements, and other institutions as 'only options' or 'stepping-stones' to independent living. Conclusion: Further research is needed to examine decision-making across multiple moves over the course of the lives of persons living with tetraplegia, particularly examining the roles of inadequate information and finances as inhibitors of freedom of choice.