Meaning-making following loss among bereaved spouses during the COVID-19 pandemic (the CO-LIVE study).

This study investigates how individuals construe, understand, and make sense of experiences during the first wave of the COVID-19 pandemic. Seventeen semi-structured interviews were conducted with bereaved spouses focusing on meaning attribution to the death of their partner. The interviewees were lacking adequate information, personalized care, and physical or emotional proximity; these challenges complicated their experience of a meaningful death of their partner. Concomitantly, many interviewees appreciated the exchange of experiences with others and any last moments together with their partner. Bereaved spouses actively sought valuable moments, during and after bereavement, that contributed to the perceived meaning.

Signs of Distress Among Dutch Healthcare Professionals Who Provided End-Of-Life Care During the COVID-19 Pandemic: A Longitudinal Online Survey (the CO-LIVE Study)

Background/aims: Providing end-of-life care during the COVID-19 pandemic often involved high workload under unusual circumstances. Aim: To describe the well-being of healthcare professionals who provided end-of-life care in the first year of the COVID-19 pandemic. Methods: A longitudinal online survey filled in multiple times by the same 169 healthcare professionals from different professions (57% nurses, 12% physicians, 31% other) and settings (26% hospital, 15% nursing home, 22% hospice, 18% home, 19% other), who provided end-of-life care during the COVID-19 pandemic. They responded to five statements about their well-being in three different time periods: during the first wave (Mar 2020 - May 2020), second wave (Sept 2020 - Nov 2020) and a third period (Dec 2020 - Apr 2021) of the COVID-19 pandemic. Differences between these time periods were assessed using confidence intervals. Results: During the first wave, second wave and third period: 64%, 36% and 39% of respondents reported that they were more stressed than usual 50%, 31% and 35% stated that their work was emotionally demanding 37%, 23% and 30% stated that their work was physically demanding 47%, 38% and 42% stated that they felt exhausted regularly 47%, 26% and 29% stated that they needed more emotional support than usual. For every statement, except the one on exhaustion, the decrease in percentage of respondents agreeing with the statement between the first and second wave was significant. The percentages were slightly higher again in the third period, although not significant. Conclusions: During the first year of the COVID-19 pandemic, a substantial part of healthcare professionals showed signs of distress. That means that the well-being of healthcare professionals is at stake. It is important to study how this further develops and what healthcare professionals' needs are to endure and recover from these challenging times.

Support for Relatives of Patients Admitted to Intensive Care Units in the Netherlands Before and During the COVID-19 Pandemic

Background/aims: During the first COVID-19 wave intensive care unit (ICU) visits of relatives were highly restricted in the Netherlands. Frequent contact with relatives of patients is a vital pillar of normal ICU care. Yet, the pandemic forced ICU teams to considerably modify their communication with relatives. Therefore, interventions including regular telephonic updates by medical (ICU and non-ICU) staff, social and spiritual workers, were started to support the relatives. Aim: Examine to what extent relatives of ICU patients with COVID-19 felt supported during the first COVID-19 wave in six Dutch ICUs and how this differs from experiences of relatives of patients at these ICUs before the pandemic. Methods: A written survey among first contact persons of ICU patients: 1) with COVID-19 during the first wave (t1: 15-3-2020 - 15-5- 2020), and 2) with mechanical ventilation pre-COVID-19 (t0: 1-12-2019 - 31-1- 2020) including items of the validated 'Consumer Quality Index - relatives' and an item on emotional support. Differences between t1 and t0 were tested using logistic regression analyses. Results: Relatives of t1 (n=130;response 71%) and t0 (n=94;response 61%) were equally positive in regard to receiving comprehensible information, receiving contradictory information, feeling taken serious by professionals, having a voice in decision-making, having enough time for questions during decision-making, and being offered emotional support. Interestingly, relatives of t1 were compared to those of t0 significantly more positive (p<0.05) about professionals having enough time for support (t1: 92.1%;to: 80.2%) and listening carefully (t1: 96.1%;to: 88.9%). Conclusions: The interventions during the first wave were able to offer similar levels of support to relatives as before COVID-19;on some aspects support was more favorably evaluated. The results give pointers for how to best support relatives in future pandemics and in 'normal' situations.

Grief After the First Wave of the Corona Pandemic: An Online Survey Among Dutch Bereaved Relatives of Patients Who Died With and Without COVID-19 (the CO-LIVE Study)

Background/aims: The circumstances under which patients died during the first wave of the COVID-19 pandemic, such as visiting restrictions, can affect the grieving process of bereaved relatives. The aim of this study was to examine how characteristics of bereaved relatives, their evaluation of the dying process, and being allowed to be with the patient in the last days of life are related to their grieving process. Methods: We conducted an open observational online survey (Nov 2020-Apr 2021) among 258 bereaved relatives to study their experience of end-of-life care for a loved one who had died during the first wave (Mar 2020-Jun 2020) of the COVID-19 pandemic. Grief was measured with the Hogan despair subscale (scores between 13 and 65), with higher scores indicating more despair. Data were analysed using descriptive statistics and multivariate analyses. Results: Most respondents were female (82%) and were children (63%) or partners (22%) of the deceased patients. The overall mean despair score was 24.6. Partners had a significantly higher mean despair score than children (33.6 vs 22.9). Terms which relatives most often selected to describe the dying process of the patient were: sad (63%), quiet (43%), painful (30%), shocking (27%) and degrading (26%). Relatives who described the dying process in more negative terms had worse mean despair scores than those who used more positive terms. Sixty percent of the relatives had not been allowed to be with the patient at the time of dying. They had higher mean despair scores (25.1) than relatives who had been allowed to be present (23.8). Conclusions: The findings indicate that the circumstances in which patients died are related to the extent of relatives' grief. These findings underline the importance of striving for a good death in the physical presence of relatives during a pandemic. Supporting relatives is important to prevent complex grief, recognising the vulnerability of especially bereaved partners.

Experiences of end of life care and dignity of dying during the first COVID-19 wave in the netherlands, an interview study among bereaved relatives (co-live study)

Background: The COVID-19 crisis affected the care for critically ill patients, with or without a COVID-19 infection, and may have affected the experience of dying for them and their relatives at the physical, psychological, social and spiritual domains. Aim: To get in-depth insight in the experienced (un)dignity of end-of-life care during the first wave of the COVID-19 outbreak in the Netherlands. Methods: A qualitative study involving 26 in-depth interviews with bereaved relatives, nested in an online survey among 370 bereaved relatives of patients who died between March and July 2020 in the Netherlands. We analysed 'matters of concern' and formulated a dignity framework for analysis based on the models of Chochinov and Van Gennip. Results: Bereaved relatives felt that dignity of their dying relative was undermined at three levels: •Personal, by the fear of becoming infected, dealing with an unknown virus, insufficient medical treatment, witnessing their relative suffocate, being isolated or cut-off, feeling powerless, having to make decisions that lack humaneness or being kept out of the decision making. •Relational, by diminished contact, not being able to comfort or care for the relative, limited possibilities of or support with telephone or video contact, not being able to say farewell, lack of attentiveness from and contact with health care professionals, tactless communication. •Social /organizational, by lacking protective resources, care staff having limited time, unclear isolation policies and restrictive visiting rules. Discussion and reflection: Various circumstances affected the dignity of end-of-life care during the first wave of the COVID-19 pandemic. Among which factors associated with the virus and the general context of the pandemic, and factors arising from preventive measures. Bereaved relatives experienced that preventive measures, based in human action, seemed alterable or could be softened by the health care professionals.