Lugo Zulay, Pellas Fréderic, Blandin Veronique, Laureys Steven, Gosseries Olivia
a GIGA-consciousness, GIGA-consciousness, Coma Science Group , University and University Hospital of Liège , Liège , Belgium.
b French Association for Locked-In Syndrome (ALIS) , Paris , France.
Brain Inj. 2017;31(12):1590-1596. doi: 10.1080/02699052.2017.1347277. Epub 2017 Aug 24.
Family needs of patients with acquired brain injuries have been studied for about three decades. In this study, we assessed the needs, the quality of life and the psychological state of relatives of patients with locked-in syndrome (LIS).
A survey was carried out using the family needs' questionnaire (FNQ).
Thirty relatives of patients with LIS fully completed the FNQ.
The most important need reported by families corresponded to the need for medical information. The highest percentage of satisfaction (66%) was also observed for this need. Among the needs for information, specifically, the most important for LIS' relatives was to know that the patient's needs and wishes were respected by the professional staff, which were fulfilled in 93% of the sample. The need for emotional support was the least important and had the lowest percentage of satisfaction (55%). The number of met/unmet needs correlated with the quality of life of the families. Most of the relatives reported anxiety feelings and depressive thoughts.
Receiving accurate medical information is the most important need for family of patients with LIS and their quality of life is correlated with the fulfilment of their needs.
对后天性脑损伤患者的家庭需求进行研究已有约三十年。在本研究中，我们评估了闭锁综合征（LIS）患者亲属的需求、生活质量和心理状态。
使用家庭需求问卷（FNQ）进行调查。
30名LIS患者的亲属完整填写了FNQ。
家庭报告的最重要需求是医疗信息需求。该需求的满意度也最高（66%）。具体而言，在信息需求中，对LIS亲属最重要的是知道专业人员尊重患者的需求和愿望，样本中有93%的情况满足了这一点。情感支持需求最不重要，满意度最低（55%）。需求的满足与否与家庭生活质量相关。大多数亲属报告有焦虑情绪和抑郁想法。
获得准确的医疗信息是LIS患者家庭最重要的需求，他们的生活质量与需求的满足情况相关。
