Place, cause and expectedness of death and relationship to the deceased are associated with poorer experiences of end-of-life care and challenges in early bereavement: Risk factors from an online survey of people bereaved during the COVID-19 pandemic

Selman, Lucy E; Farnell, Damian J. J.; Longo, Mirella; Goss, Silvia; Seddon, Kathy; Torrens‐Burton, Anna; Mayland, Catriona; Wakefield, Donna; Johnston, Bridget; Byrne, Anthony; Harrop, Emily

doi:10.1101/2021.09.09.21263341

Cited by 7 publications

(16 citation statements)

References 39 publications

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“…By contrast, deaths that occurred in hospice/at home, and deaths that were expected increased the likelihood of the bereaved person being involved in care decisions and feeling well supported by healthcare professionals after the death. Bereavement due to Covid-19, compared with all other types of deaths, decreased the likelihood of being involved in care decisions and of feeling well supported by HCPs after the death, while increasing the likelihood of being unable to say goodbye (Selman et al, 2021a).…”

Section: Experiences At the End Of Life And In Early Bereavementmentioning

confidence: 96%

“…Consistent with these challenges, around a half of people reported high/fairly high needs for help with 'loneliness and isolation', 'feeling comforted and reassured', 'finding balance between grieving and other areas of life' and 'regaining sense of purpose and meaning in life' (Harrop et al, 2021a). Social isolation and loneliness were also found to be especially prevalent among people bereaved by a Covid-19 death and among bereaved partners (Selman et al, 2021a). This contrasts with results from one of the Netherland surveys, which found that satisfaction with social support did not differ between people bereaved by Covid-19 versus other types of deaths (Eisma et al, 2021).…”

Section: Coping and Informal Support During The Pandemicmentioning

confidence: 99%

“…These included restricted funerals (93%), limited contact with other close relatives or friends (80%), loneliness and social isolation (67%) and being 'unable to say goodbye as I would have liked' (64%). There was wide variation in overall reported experiences of end-of-life care; for example, while 21.8% reported they were always involved in decision about the care of their loved one, 21.8% reported that they were never involved; 32.3% reported that they were fully informed about the approaching death while 17.7% said they were not at all informed (Selman et al, 2021a). Lack of support following the death was a major issue, with 35.4% of participants reporting that they felt 'not at all' supported by professionals immediately after the death.…”

Section: Experiences At the End Of Life And In Early Bereavementmentioning

confidence: 99%

“…We identified several risk factors for problematic experiences towards the end of life and in early bereavement including place of death and whether the death was expected or not (Selman et al, 2021a). Deaths in hospital/care home compared with in hospice/at home increased the likelihood of the bereaved person being unable to visit prior to death or say goodbye as they wanted.…”

Section: Experiences At the End Of Life And In Early Bereavementmentioning

confidence: 99%

“…The study publications summarised here report on interim (Harrop et al, 2020) and full results from the baseline survey (Harrop et al, 2021a;2021b;Selman et al, 2021a;Torrens-Burton et al, 2021). We also include in the summary a publication reporting results from the second round survey responses of 104 parent/guardian participants, who answered a question on the support experiences and needs of their children, aged 25 or under (Harrop et al, 2021b).…”

Section: Introductionmentioning

confidence: 99%

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Bereavement during the Covid-19 pandemic in the UK: What do we know so far?

Harrop

Selman

2022

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The Covid-19 pandemic has been a devastating mass bereavement event, with measures to control the virus leading to unprecedented changes to end-of-life and mourning practices. In this review we consider the research evidence on the experiences of people bereaved during the pandemic. We summarise key findings reported in the first five publications from our UK-based Bereavement during COVID-19 study, drawing comparisons with available evidence from other studies of bereavement during the pandemic. We summarise these findings across three main topics: experiences at the end of life and in early bereavement; coping and informal support during the pandemic; and access to bereavement and mental health services. The synthesis demonstrates the exceptional challenges of pandemic bereavement, including high levels of disruption to end-of-life care, dying and mourning practices as well as to people’s social networks and usual coping mechanisms. We identified considerable needs for emotional, therapeutic and informal support among bereaved people, compounded by significant difficulties in receiving and accessing such support. We provide evidence-based recommendations for improving people’s experiences of bereavement and access to support at all levels.

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Section: Experiences At the End Of Life And In Early Bereavementmentioning

confidence: 96%

Section: Coping and Informal Support During The Pandemicmentioning

confidence: 99%

Section: Experiences At the End Of Life And In Early Bereavementmentioning

confidence: 99%

Section: Experiences At the End Of Life And In Early Bereavementmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Bereavement during the Covid-19 pandemic in the UK: What do we know so far?

Harrop

Selman

2022

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Parental perspectives on the grief and support needs of children and young people bereaved during the Covid-19 pandemic: Qualitative findings from a national survey

Harrop

Goss

Longo

et al. 2021

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Background: During the Covid-19 pandemic, many children and young people have experienced the death of close family members, whilst also facing unprecedented disruption to their lives. This study aimed to investigate the experiences and support needs of bereaved children and young people from the perspective of their parents and guardians. Methods: We analysed cross-sectional qualitative free-text data from a survey of adults bereaved in the UK during the pandemic. Participants were recruited via media, social media, national associations and community/charitable organisations. Thematic analysis was conducted on free text data collected from parent/guardian participants in response to a survey question on the bereavement experiences and support needs of their children. Results: Free-text data from 104 parent and grandparent participants was included. Three main themes were identified: the pandemic-related challenges and struggles experienced by children and young people; family support and coping; and support from schools and services. Pandemic-related challenges include the impacts of being separated from the relative prior to their death, isolation from peers and other family members, and disruption to daily routines and wider support networks. Examples were given of effective family coping and communication, but also of difficulties relating to parental grief and childrens existing mental health problems. School and bereavement service provision of specialist support was valued, but there was evidence of unmet need, with some participants reporting a lack of access to specialist grief or mental health support. Conclusion: Children and young people have faced additional strains and challenges associated with pandemic bereavement. We recommend resources and initiatives that facilitate supportive communication within family and school settings, adequate resourcing of school and community-based specialist bereavement/mental health services, and increased information and signposting to the support that is available.

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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

Torrens‐Burton

Goss

Sutton

et al. 2021

Preprint

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The COVID-19 pandemic has been a devastating, mass bereavement event characterised by sudden unexpected deaths and high levels of disruption to end-of-life, grieving and coping processes, as well as social life more broadly. We analysed qualitative free-text data from two independent UK-wide online surveys to describe in depth the experiences of 881 people bereaved during the Covid-19 pandemic using. We analysed the data in two phases, conducting an inductive thematic analysis and then applying Stroebe and Schut Dual Process Model (DPM) (1999; 2010) as an analytic lens to further contextualise and interpret the data. The DPM identifies loss-oriented and restoration-oriented coping processes between which grieving people naturally oscillate. Loss-oriented coping involves coming to terms with the death and lost relationship, while restoration-oriented coping involves adapting to new ways of life. We identified six main themes: troubled deaths (guilt, anger and unanswered questions); mourning, memorialisation and death administration; mass bereavement, the media and the ongoing threat of the pandemic; grieving and coping (alone and with others); work and employment; and support from the health and social care system. Examples of loss-oriented stressors included being unable to visit or say goodbye, the sudden and traumatic nature of many deaths, and restricted funeral and memorialisation practices. Associated reactions were feelings of guilt and anger, and problems accepting the death and starting to grieve. Examples of restoration-oriented stressors and reactions were stressful death-related administration and severely curtailed social networks, support systems and social/recreational activities, which impacted peoples ability to cope. Study results demonstrate the exceptionally difficult sets of experiences associated with pandemic bereavement, and the utility of the DPM for conceptualizing these additional challenges and their impacts on grieving. Our analysis builds and expands on previous use of the DPM (Stroebe and Schut, 2021) 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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Place, cause and expectedness of death and relationship to the deceased are associated with poorer experiences of end-of-life care and challenges in early bereavement: Risk factors from an online survey of people bereaved during the COVID-19 pandemic

Cited by 7 publications

References 39 publications

Bereavement during the Covid-19 pandemic in the UK: What do we know so far?

Bereavement during the Covid-19 pandemic in the UK: What do we know so far?

Parental perspectives on the grief and support needs of children and young people bereaved during the Covid-19 pandemic: Qualitative findings from a national survey

“It was brutal. It still is”: A qualitative analysis of the challenges of bereavement during the COVID-19 pandemic reported in two national surveys

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