Quality of life in patients with mild acute brain injury and their carers’ needs in Greece

Evgenia Stasinopoulou, M. Giannakopoulou, G. Fildisis, M. Kalafati, C. Lemonidou
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Abstract

Background: Investigating quality of life (QoL) is of crucial importance for the scientific community as it could function not only as an indicator of prognosis and post-traumatic clinical and psychological changes in patients who have suffered from acute brain injury (ABI), but also as an indicator of the effectiveness of their treatment and social rehabilitation. In addition, it can highlight changes in the carer’s health, social life and well-being. This study examined the QoL of patients following ABI and the needs of their carers. Material and methodology: This study was conducted in patients suffering from ABI, who were admitted to the General Hospital of Attica “KAT” and to the National Rehabilitation Center and on their carers. Data collection including demographics and Quality of Life After Brain Injury Questionnaire (QOLIBRI) and the Family Needs Questionnaire (FNQ) was performed during patients’ rehabilitation, while six months after release, a follow-up survey was conducted using the same questionnaires. Statistical analysis of data was performed using SPSS. Results: We analysed 50 patients with mild ABI (GCS ≥ of 13/15) during rehabilitation and six months after release and found that their QoL improves and is positively related to improvement of health status (i.e. in terms of thinking ability, QoL improves from r = 2.33, p < .01 to r = 3.37, p < .001). We also found that “Age” has the greatest impact on the patient’s progress for recovery and the general QoL after ABI ( r = -0.423, p < .01). In addition, it was found that carers of patients with ABI are confronted with the burden of care, while they record both fulfilled and unmet needs regarding their individual needs (i.e. only for 30% of the sample the need for help in preparing them for the worst is met). Conclusions: Our study confirms previous findings that underline that ABI has a major impact on QoL of both patients and their carers providing them with long-term daily care. Although it has been found that over time there is an improvement in the QoL of patients with ABI, the absence of an official support network for carers from public health system, hospitals and rehabilitation centers may adversely affect the QoL of patients and their carers. Therefore, more structured, long-term family-wide monitoring and support is needed, focusing on identifying those at risk of social isolation and incomplete social networking.
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希腊轻度急性脑损伤患者的生活质量及其护理人员的需求
背景:研究生活质量(QoL)对科学界至关重要,因为它不仅可以作为急性脑损伤(ABI)患者预后和创伤后临床和心理变化的指标,还可以作为他们治疗和社会康复有效性的指标。此外,它还可以突出护理人员的健康、社会生活和幸福感的变化。本研究调查了ABI患者的生活质量及其护理人员的需求。材料和方法:这项研究是在阿提卡综合医院和国家康复中心的ABI患者及其护理人员中进行的。在患者康复期间进行了数据收集,包括人口统计和脑损伤后生活质量问卷(QOLIBRI)和家庭需求问卷(FNQ),而在出院六个月后,使用相同的问卷进行了随访调查。使用SPSS对数据进行统计分析。结果:我们分析了50名轻度ABI(GCS≥13/15)患者在康复期间和出院后6个月的生活质量,发现他们的生活质量得到改善,并与健康状况的改善呈正相关(即在思维能力方面,生活质量从r=2.33,p<.01提高到r=3.37,p<.001)。我们还发现,“年龄”对患者的康复进展影响最大以及ABI后的总体生活质量(r=-0.423,p<0.01)。此外,研究发现,ABI患者的护理人员面临着护理负担,同时他们记录了关于个人需求的满足和未满足需求(即,只有30%的样本满足了帮助他们做好最坏准备的需求)。结论:我们的研究证实了先前的研究结果,即ABI对患者及其护理人员的生活质量有重大影响,为他们提供长期的日常护理。尽管已经发现,随着时间的推移,ABI患者的生活质量有所改善,但公共卫生系统、医院和康复中心缺乏官方的护理人员支持网络,可能会对患者及其护理人员的生活质量产生不利影响。因此,需要更结构化、更长期的全家庭监测和支持,重点是识别那些有社交孤立和社交网络不完整风险的人。
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