Experiences with and needs for aftercare following the death of a loved one in the ICU: a mixed-methods study among bereaved relatives

Sophie C. Renckens*, Bregje D. Onwuteaka-Philipsen, Zina Jorna, Hanna T. Klop, Chantal du Perron, Lia van Zuylen, Monique A.H. Steegers, Birkitt L. ten Tusscher, Margo M.C. van Mol, Wouter de Ruijter, H. Roeline Pasman

*Corresponding author for this work

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Background: Bereaved relatives of intensive care unit (ICU) patients are at increased risk of psychological complaints. Aftercare might help them cope with processing the ICU admission and their loved one’s death. There is little (qualitative) evidence on how bereaved relatives experience aftercare. Also, the COVID-19 pandemic likely impacted aftercare provision. We aim to examine how many relatives in Dutch ICUs received aftercare before and during the pandemic and to qualitatively describe their experiences and needs regarding aftercare. Methods: A mixed-methods study among relatives of patients who died in an ICU before or during the COVID-19 pandemic. Bereaved relatives in six ICUs completed a questionnaire (n = 90), including two items on aftercare. These were analyzed using descriptive statistics and Chi-squared tests. Subsequently, both relatives that received and relatives that did not receive aftercare were interviewed about their experiences and needs regarding aftercare. The interviews were thematically analyzed. Results: After the passing of a loved one, 44% of the relatives were asked by a healthcare professional from the hospital how they were doing, and 26% had had a follow-up conversation. Both happened more often during the first wave of the pandemic than during the second wave or before the pandemic. The most common reason for not having had a follow-up conversation was not knowing about this option (44%), followed by not feeling a need (26%). Regarding the latter, interviewed relatives explained that this would not revive their loved one or that they had already discussed everything they wanted. Relatives who wanted a follow-up conversation, wanted this because this would help them realize the severity of their loved one’s illness, to exchange personal experiences, and/or to thank the ICU team. Those with a follow-up conversation said that they had reviewed the medical course of the admission and/or discussed their (mental) well-being. Conclusions: ICU healthcare professionals may play a vital role in addressing aftercare needs by asking relatives how they are doing in the weeks following the death of their loved one and offering them a follow-up conversation with an ICU physician. We recommend to include aftercare for bereaved relatives in ICU guidelines.

Original languageEnglish
Article number65
JournalBMC Palliative Care
Issue number1
Publication statusPublished - 4 Mar 2024

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