Management Psychology, Coping, Resilience & Ethics, Meiersheide 8a, 53773, Hennef, Germany.
Institute of Medical Psychology and Behavioral Neurobiology, Eberhardt Karls University of Tübingen, Silcherstr. 5, 72076, Tübingen, Germany.
BMC Pediatr. 2021 Mar 8;21(1):116. doi: 10.1186/s12887-021-02549-8.
The article examines life conditions in families living together with a child in an Unresponsive Wakefulness Syndrome (UWS). Such families experience severe stress at financial, logistical, and existential level.
We investigated a large sample of families living with a UWS child (comprising 13% of the total population) and compared these families with families without a chronically ill child. A set of four questionnaires aimed to evaluate life conditions entails a total of 204 items. One of the questionnaires was developed by the corresponding author specifically for this study. The questionnaires were positively accepted by the persons concerned and permitted us to test six specific hypotheses.
Life satisfaction (LS) in families with a UWS child was significantly lower than in control families. LS was significantly affected by external situational factors (everyday support, home visits, support by a doctor, nursing service, health insurance, etc.). Self-management skills were on average lower in families with a UWS child than in controls. These skills strongly and directly correlated with LS. Further, LS was not significantly related to the acceptance of feelings and negatively correlated with the floods of emotions. The relationship with the own child was equally satisfactory in families with and without a UWS child indicating that the families regard their UWS child as a full family member.
The data show that happy life is possible in families living together with a UWS child. They further specify conditions for satisfactory life under multiple highly severe challenges. Personal self-management skills, coping strategies, and resilience, as well as outside social support, appear to be critical factors.
本文考察了与处于无反应性觉醒综合征（UWS）中的儿童共同生活的家庭的生活条件。这些家庭在经济、后勤和存在层面上承受着巨大的压力。
我们调查了一个与 UWS 儿童共同生活的大家庭样本（占总人口的 13%），并将这些家庭与没有慢性病儿童的家庭进行了比较。一套旨在评估生活条件的四个问卷共包含 204 个项目。其中一个问卷是由相应的作者专门为这项研究开发的。这些问卷得到了相关人员的积极认可，并允许我们测试六个具体的假设。
有 UWS 儿童的家庭的生活满意度（LS）显著低于对照组家庭。LS 受到外部情境因素（日常支持、家访、医生支持、护理服务、健康保险等）的显著影响。自我管理技能在有 UWS 儿童的家庭中平均低于对照组。这些技能与 LS 呈强烈的直接相关。此外，LS 与情感的接受程度没有显著关系，与情感的洪流呈负相关。与自己孩子的关系在有和没有 UWS 孩子的家庭中同样令人满意，这表明这些家庭将他们的 UWS 孩子视为完整的家庭成员。
数据表明，与 UWS 儿童共同生活的家庭可以过上幸福的生活。它们进一步确定了在面临多种高度严峻挑战时生活满意的条件。个人的自我管理技能、应对策略和适应力，以及外部的社会支持，似乎是关键因素。
