Bergmark B A, Winograd C H, Koopman C
Program in Human Biology, Stanford University, Stanford, CA, USA.
Spinal Cord. 2008 Oct;46(10):684-9. doi: 10.1038/sc.2008.15. Epub 2008 Mar 4.
Cross-sectional analysis of individual interviews with a convenience sample of persons living with tetraplegia.
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.
California and Minnesota, United States.
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.
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.
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.
对四肢瘫痪患者便利样本进行个体访谈的横断面分析。
描述脊髓损伤后初次急性医疗护理出院后四肢瘫痪患者的居住模式、每次居住迁移的决策过程以及不同居住类型下的生活质量决定因素。
美国加利福尼亚州和明尼苏达州。
共对22名创伤性脊髓损伤四肢瘫痪的成年人进行了访谈，了解他们的居住历史、每次迁移的居住决策过程以及他们居住过的每个住所的积极和消极特征。
信息、资金、保险、可达性、亲密关系和私人助理对居住地点的影响最大，信息不足和资金不足的影响尤为显著。参与者经常将父母家视为“唯一选择”“避难所”或“阻碍成长”的环境。他们将自己的家视为“唯一选择”或改善生活质量的途径，而将其他机构视为独立生活的“唯一选择”或“垫脚石”。
需要进一步研究以考察四肢瘫痪患者一生中多次迁移的决策过程，特别是研究信息不足和资金不足作为选择自由抑制因素所起的作用。
