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Life satisfaction in families with a child in an Unresponsive Wakefulness Syndrome
BACKGROUND: 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. METHODS: We investigated a large sample of families living with a UWS child...
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Formato: | Online Artículo Texto |
Lenguaje: | English |
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BioMed Central
2021
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7938537/ https://www.ncbi.nlm.nih.gov/pubmed/33685445 http://dx.doi.org/10.1186/s12887-021-02549-8 |
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author | Chadasch, Christiane Kotchoubey, Boris |
author_facet | Chadasch, Christiane Kotchoubey, Boris |
author_sort | Chadasch, Christiane |
collection | PubMed |
description | BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12887-021-02549-8. |
format | Online Article Text |
id | pubmed-7938537 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2021 |
publisher | BioMed Central |
record_format | MEDLINE/PubMed |
spelling | pubmed-79385372021-03-09 Life satisfaction in families with a child in an Unresponsive Wakefulness Syndrome Chadasch, Christiane Kotchoubey, Boris BMC Pediatr Research Article BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12887-021-02549-8. BioMed Central 2021-03-08 /pmc/articles/PMC7938537/ /pubmed/33685445 http://dx.doi.org/10.1186/s12887-021-02549-8 Text en © The Author(s) 2021 Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data. |
spellingShingle | Research Article Chadasch, Christiane Kotchoubey, Boris Life satisfaction in families with a child in an Unresponsive Wakefulness Syndrome |
title | Life satisfaction in families with a child in an Unresponsive Wakefulness Syndrome |
title_full | Life satisfaction in families with a child in an Unresponsive Wakefulness Syndrome |
title_fullStr | Life satisfaction in families with a child in an Unresponsive Wakefulness Syndrome |
title_full_unstemmed | Life satisfaction in families with a child in an Unresponsive Wakefulness Syndrome |
title_short | Life satisfaction in families with a child in an Unresponsive Wakefulness Syndrome |
title_sort | life satisfaction in families with a child in an unresponsive wakefulness syndrome |
topic | Research Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7938537/ https://www.ncbi.nlm.nih.gov/pubmed/33685445 http://dx.doi.org/10.1186/s12887-021-02549-8 |
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