Abstract
BackgroundThe 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.MethodsWe 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.ResultsLife 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.ConclusionsThe 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.
Highlights
The article examines life conditions in families living together with a child in an Unresponsive Wakefulness Syndrome (UWS)
Four of them had to be excluded from the study because, contrary to original statements, it was found that the UWS patients were older than 18 at the time point of the event leading to the UWS
General characteristic of the families 90.4% of the respondents lived in Germany and the remaining 9.6% in Austria. 92.3% of the responders were females
Summary
The article examines life conditions in families living together with a child in an Unresponsive Wakefulness Syndrome (UWS). While the exceptionally low Dutch estimate (0.2: [40]) was obtained on the basis of studying nursing homes only, a later Dutch study encompassing nursing homes, hospitals, rehabilitation centers, and hospices, revealed an even lower estimate close to 0.15 [68] These differences can probably be attributed to different thresholds existing in different countries for termination of lifesustaining measures in UWS or in coma preceding UWS [69]. Chadasch and Kotchoubey BMC Pediatrics (2021) 21:116 discussion that the real number must be somewhat higher This is in line with the later data of Geremek [17], according to which there should be some 600 UWS children in Germany
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