Richard L. Roudebush Department of Veterans Affairs Medical Center, Center for Health Information and Communication, Health Services Research and Development, Indianapolis, IN, USA.
Departments of Psychology, Indiana University Purdue University at Indianapolis, Indianapolis, IN, USA.
Health Soc Care Community. 2022 May;30(3):988-997. doi: 10.1111/hsc.13275. Epub 2021 Jan 20.
Little research has documented the experiences of patients with traumatic brain injury (TBI) and their caregivers in navigating health systems for TBI care. In this qualitative study, we conducted semi-structured interviews with 62 participants (34 patients with moderate or severe TBI and 28 caregivers) from Central Indiana. Data were collected from January to September 2016 and analysed using a constructivist grounded theory approach. Participants discussed three significant challenges about navigating health services for TBI care: lack of support for care navigation, financial barriers, and communication barriers. Participants described how navigating outpatient healthcare services for TBI remains complex and emphasised the need for ongoing care navigation support throughout the care continuum. They detailed the long-term financial burden of TBI including high treatment costs, limited insurance coverage, and the emotional toll that financial stress has on their ability to navigate healthcare services for ongoing TBI-related needs. They also discussed how ineffective patient-provider communication and lack of reliable, timely and comprehensive health information about TBI limited their engagement in and navigation of TBI health services. Findings suggest that persons with TBI and their caregivers need ongoing support to manage the long-term impacts of TBI. Efforts to provide care coordination and navigation to patients with TBI and their families are urgently needed to facilitate greater access to care, effective healthcare navigation and improved health outcomes.
针对创伤性脑损伤（TBI）患者及其照顾者在创伤性脑损伤护理的医疗体系中就诊的经历，相关研究较少。在这项定性研究中，我们对来自印第安纳州中部的 62 名参与者（34 名中重度 TBI 患者和 28 名照顾者）进行了半结构化访谈。数据收集于 2016 年 1 月至 9 月，采用建构主义扎根理论方法进行分析。参与者讨论了在创伤性脑损伤护理的医疗服务就诊中面临的三个重大挑战：缺乏护理导航支持、经济障碍和沟通障碍。参与者描述了如何使创伤性脑损伤的门诊医疗服务就诊仍然很复杂，并强调了在整个护理过程中持续提供护理导航支持的必要性。他们详细介绍了创伤性脑损伤的长期经济负担，包括高昂的治疗费用、有限的保险覆盖范围，以及经济压力对他们进行创伤性脑损伤相关需求的医疗服务就诊能力的情绪影响。他们还讨论了患者与提供者之间沟通不畅以及缺乏有关创伤性脑损伤的可靠、及时和全面的健康信息如何限制他们参与和就诊创伤性脑损伤的医疗服务。研究结果表明，创伤性脑损伤患者及其照顾者需要持续支持，以管理创伤性脑损伤的长期影响。迫切需要为创伤性脑损伤患者及其家属提供护理协调和导航，以促进更多地获得护理、有效的医疗保健导航和改善健康结果。
