探索创伤性脑损伤患者及其家庭的服务需求与经历：南卡罗来纳州的经验
Exploring the service needs and experiences of persons with TBI and their families: the South Carolina experience.
作者信息
Leith Katherine H, Phillips Lyn, Sample Pat L
机构信息
Center for Health Services and Policy Research, Norman J. Arnold School of Public Health, University of South Carolina, SC, USA.
出版信息
Brain Inj. 2004 Dec;18(12):1191-208. doi: 10.1080/02699050410001719943.
PRIMARY OBJECTIVE
This article presents the results of four focus groups with persons with traumatic brain injury (TBI) and their families living in South Carolina. The objective was to learn what participants perceive their service needs to be and where they experience service gaps in the existing system of TBI services.
METHODS AND PROCEDURES
Four focus groups were conducted. In each group, a convenience sample of persons < 5 years post-injury and family members responded to 10 semi-structured questions.
MAIN OUTCOMES
Qualitative content analysis revealed overwhelming consensus regarding the need for (1) early, continuous, comprehensive service delivery; (2) information/education; (3) formal/informal advocacy; (4) empowerment of persons with TBI/families; and (5) human connectedness/social belonging.
CONCLUSIONS
Persons with TBI and families in South Carolina experience the service system as unorganized, uneducated, unresponsive and uncaring. Effective strategies are needed that link services into an ongoing continuum of TBI care, increase TBI-specific education and awareness and foster social re-integration.
主要目标
本文展示了对南卡罗来纳州创伤性脑损伤（TBI）患者及其家属进行的四个焦点小组研究的结果。目的是了解参与者认为他们的服务需求是什么，以及他们在现有TBI服务体系中体验到的服务差距在哪里。
方法与步骤
进行了四个焦点小组研究。在每个小组中，选取了受伤后不到5年的患者及家属作为便利样本，回答了10个半结构化问题。
主要结果
定性内容分析显示，对于以下需求存在压倒性的共识：（1）早期、持续、全面的服务提供；（2）信息/教育；（3）正式/非正式的宣传；（4）TBI患者/家属的赋权；（5）人际联系/社会归属感。
结论
南卡罗来纳州的TBI患者及其家属认为服务体系无组织、缺乏教育、反应迟钝且冷漠。需要有效的策略将各项服务整合到持续的TBI护理连续体中，增加TBI相关的教育和意识，并促进社会重新融入。
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