Dignity reflections based on experiences of end‐of‐life care during the first wave of the COVID‐19 pandemic: A qualitative inquiry among bereaved relatives in the Netherlands (the CO‐LIVE study)

Becqué, Yvonne N.; Geugten, Wendy van der; Heide, Agnes van der; Korfage, Ida J.; Pasman, H. Roeline W.; Onwuteaka‐Philipsen, Bregje D.; Zee, Masha; Witkamp, Erica; Goossensen, Anne

doi:10.1111/scs.13038

Cited by 27 publications

(43 citation statements)

References 34 publications

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“…Such experiences were often described as traumatic, and accompanied by feelings of sadness, guilt, anxiety and feeling ‘cheated’. 1 , 13 High levels of loneliness, social isolation and emotional support needs have also been observed among bereaved participants in this study, in conjunction with difficulties accessing both informal and formal sources of bereavement support. 5 , 16 …”

Section: Introductionsupporting

confidence: 59%

“… 12 Quantitative and qualitative studies have identified difficult experiences of end-of-life care, such as lack of communication and contact with healthcare staff and patients prior to the death. 1 , 13 – 16 Where bereaved people struggled to make sense of such experiences, ‘disrupted meaning’ was found to cause functional impairment and dysfunctional grief symptoms. 12 The distress caused to family members by visiting restrictions, missed opportunities to spend time with and say goodbye to their dying family member, and feelings of frustration at poor communication from healthcare staff is documented in the qualitative results of one of these studies.…”

Section: Introductionmentioning

confidence: 99%

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‘It was brutal. It still is’: a qualitative analysis of the challenges of bereavement during the COVID-19 pandemic reported in two national surveys

et al. 2022

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Background: The COVID-19 pandemic has been a devastating, mass bereavement event characterised by high levels of disruption to end-of-life, grieving and coping processes. Quantitative evidence is emerging on the effects of the pandemic on grief outcomes, but rich qualitative evidence on the lived experiences of people bereaved during these times is lacking. Methods: We analysed qualitative data from two independent UK-wide online surveys to describe the experiences of 881 people bereaved during the pandemic. We analysed the data in two phases, conducting an inductive thematic analysis and then applying Stroebe and Schut’s Dual Process Model (DPM) and concepts of loss-oriented and restoration-oriented coping (1999; 2010) as an analytic lens to further contextualise and interpret the data. Results: We identified six main themes: troubled deaths; mourning, memorialisation and death administration; mass bereavement, the media and the ongoing threat of the pandemic; grieving and coping; work and employment; and support from the health and social care system. Examples of loss-oriented stressors included being unable to visit and say goodbye at the end of life and restricted funeral and memorialisation practices. Associated reactions were feelings of guilt, anger, and problems accepting the death and beginning to grieve. Examples of restoration-oriented stressors and reactions were severely curtailed support-systems and social/recreational activities, which impacted people’s ability to cope. Conclusion: Study results demonstrate the exceptionally difficult sets of experiences associated with pandemic bereavement, and the utility of the DPM for conceptualising these additional challenges and their impacts on grieving. Our analysis builds and expands on previous use of the DPM in explicating the impact of the pandemic on bereavement. We make recommendations for statutory, private and third sector organisations for improving the experiences of people bereaved during and following this and future pandemics.

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Section: Introductionsupporting

confidence: 59%

Section: Introductionmentioning

confidence: 99%

‘It was brutal. It still is’: a qualitative analysis of the challenges of bereavement during the COVID-19 pandemic reported in two national surveys

et al. 2022

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“…Out of the total number of 28 studies, 16 articles reported qualitative data ( Becqué et al, 2021 ; Borghi & Menichetti, 2021 ; Cardoso et al, 2020 ; De Leon Corona et al, 2021 ; Guité-Verret et al, 2021 ; Hamid & Jahangir, 2020 ; Helton et al, 2020 ; Hernández-Fernández & Meneses-Falcón, 2021 ; Kentish-Barnes et al, 2021 ; Menichetti Delor et al, 2021 ; Mohammadi et al, 2021 ; Moore et al, 2020 ; Mortazavi et al, 2021 ; Motamedzadeh et al, 2021 ; Selman et al., 2021 ; Testoni et al, 2021 ), 10 articles were quantitative studies ( Carson et al, 2021 ; Chen & Tang, 2021 ; Eisma & Tamminga, 2020 ; Eisma et al, 2021 ; Lee et al, 2021 ; Schloesser et al, 2021 ; Şimşek Arslan & Buldukoğlu, 2021 ; Tang & Xiang, 2021 ; Wang et al, 2021 ), and two articles had a mixed-methods design ( Harrop et al, 2021 ; Mayland et al, 2021 ). An overview of the included studies is provided in Table 2 .…”

Section: Resultsmentioning

confidence: 99%

The Effect of the COVID-19 Pandemic on Grief Experiences of Bereaved Relatives: An Overview Review

Schaik

Brouwer

Knibbe³

et al. 2022

Omega (Westport)

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The COVID-19 pandemic has disrupted grief experiences of bereaved relatives and altered accustomed ways of coping with loss. To understand how bereaved relatives experienced grief during COVID-19, a review, using the overview method, was conducted. An overview of empirical data about this subject has been lacking and therefore, PubMed and CINAHL databases were searched for empirical studies published from January 1, 2020 until December 31, 2021. 28 articles were included in the review. Thematic analysis showed different emotional responses, changes in grief, the effect of absence during final moments, a lack of involvement in the caring process, the impact on communities and social support systems and the alteration of funerals among bereaved relatives. During COVID-19, death is characterized by poor bereavement outcomes and health implications, but bereaved also show signs of resilience and coping. Directions for future research about cultural and societal differences in grief and support methods are suggested.

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“…It is therefore vital that health professionals are clearly aware of the possibilities for family caregivers to be there. The European Respiratory Society also recommends that family caregivers be allowed to visit dying patients despite the infection risk (Janssen et al, 2020 ) and recent studies of bereaved relatives highlight this issue (Becqué et al, 2021 ; Guité-Verret et al, 2021 ; Hanna et al, 2021 ). Furthermore, visiting regulations must be communicated clearly and be easy to understand (Hart et al, 2020 ).…”

Section: Discussionmentioning

confidence: 99%

The significance of the COVID-19 pandemic for family caregivers of non-COVID-19 patients in need of specialized palliative care at home: a qualitative study

Wind

Vedsegaard

Marsaa³

et al. 2022

International Journal of Qualitative Studies on Health and Well

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Purpose It is well known that being a family caregiver of a palliative patient in general is rewarding as well as burdensome. The COVID-19 pandemic may have exacerbated this situation. We therefore explored the significance of the COVID-19 pandemic for family caregivers of non-COVID-19 patients in need of specialized palliative care at home. Methods Open-ended, semi-structured telephone interviews were conducted with 15 family caregivers of patients treated by a specialized palliative outpatient unit in a Danish hospital. Interviews were analysed using inductive thematic analysis. Results Four themes concerning the significance of the COVID-19 pandemic were identified: 1) being a family caregiver of a patient whose lifespan is already limited, 2) dealing with the risk of passing on COVID-19 oneself, 3) dealing with the risk of others passing on COVID-19 to the patient at home, and 4) living with modified specialized palliative care. Conclusion The COVID-19 pandemic had a radical impact on some family caregivers causing emotional despair. They feared not only infecting the patient with SARS-CoV-2 to cause an untimely death but also being unable to be there for the patient during hospitalization, especially in the patient’s final days.

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Dignity reflections based on experiences of end‐of‐life care during the first wave of the COVID‐19 pandemic: A qualitative inquiry among bereaved relatives in the Netherlands (the CO‐LIVE study)

Abstract: This is an open access article under the terms of the Creat ive Commo ns Attri butio n-NonCo mmerc ial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made.

Cited by 27 publications

References 34 publications

‘It was brutal. It still is’: a qualitative analysis of the challenges of bereavement during the COVID-19 pandemic reported in two national surveys

‘It was brutal. It still is’: a qualitative analysis of the challenges of bereavement during the COVID-19 pandemic reported in two national surveys

The Effect of the COVID-19 Pandemic on Grief Experiences of Bereaved Relatives: An Overview Review

The significance of the COVID-19 pandemic for family caregivers of non-COVID-19 patients in need of specialized palliative care at home: a qualitative study

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