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| Content Provider | Springer Nature : BioMed Central |
|---|---|
| Author | Renckens, Sophie C. Pasman, H. Roeline Jorna, Zina Klop, Hanna T. Perron, Chantal du van Zuylen, Lia Steegers, Monique A.H. ten Tusscher, Birkitt L. van Mol, Margo M.C. Vloet, Lilian C.M. Onwuteaka-Philipsen, Bregje D. |
| Abstract | Background In the intensive care unit (ICU) relatives play a crucial role as surrogate decision-makers, since most patients cannot communicate due to their illness and treatment. Their level of involvement in decision-making can affect their psychological well-being. During the COVID-19 pandemic, relatives’ involvement probably changed. We aim to investigate relatives’ involvement in decision-making in the ICU before and during the pandemic and their experiences and preferences in this regard. Methods A mixed-methods study among relatives of ICU patients admitted to an ICU before or during the COVID-19 pandemic. Relatives in six ICUs completed a questionnaire (n = 329), including two items on decision-making. These were analysed using descriptive statistics and logistic regression analyses. Subsequently, relatives (n = 24) were interviewed about their experiences and preferences regarding decision-making. Thematic analysis was used for analysing the qualitative data. Results Nearly 55% of the relatives indicated they were at least occasionally asked to be involved in important treatment decisions and of these relatives 97.1% reported to have had enough time to discuss questions and concerns when important decisions were to be made. During the first COVID-19 wave relatives were significantly less likely to be involved in decision-making compared to relatives from pre-COVID-19. The interviews showed that involvement varied from being informed about an already made decision to deliberation about the best treatment option. Preferences for involvement also varied, with some relatives preferring no involvement due to a perceived lack of expertise and others preferring an active role as the patient’s advocate. Discussing a patient’s quality of life was appreciated by relatives, and according to relatives healthcare professionals also found this valuable. In some cases the preferred and actual involvement was in discordance, preferring either a larger or a smaller role. Conclusions As treatment alignment with a patient’s values and preferences and accordance between preferred and actual involvement in decision-making is very important, we suggest that the treatment decision-making process should start with discussions about a patient’s quality of life, followed by tailoring the process to relatives’ preferences as much as possible. Healthcare professionals should be aware of relatives’ heterogeneous and possibly changing preferences regarding the decision-making process. |
| Related Links | https://bmcmedinformdecismak.biomedcentral.com/counter/pdf/10.1186/s12911-024-02429-y.pdf |
| Ending Page | 14 |
| Page Count | 14 |
| Starting Page | 1 |
| File Format | HTM / HTML |
| ISSN | 14726947 |
| DOI | 10.1186/s12911-024-02429-y |
| Journal | BMC Medical Informatics and Decision Making |
| Issue Number | 1 |
| Volume Number | 24 |
| Language | English |
| Publisher | BioMed Central |
| Publisher Date | 2024-02-12 |
| Access Restriction | Open |
| Subject Keyword | Health Informatics Information Systems and Communication Service Management of Computing and Information Systems ICU Family support Decision-making Quality of life COVID-19 Critical care |
| Content Type | Text |
| Resource Type | Article |
| Subject | Health Informatics Computer Science Applications Health Policy |
| Journal Impact Factor | 3.3/2023 |
| 5-Year Journal Impact Factor | 3.9/2023 |
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