'Saying goodbye' during the COVID-19 pandemic: A document analysis of online newspapers with implications for end of life care.
TL;DR: In this article, news media create a sense-making narrative, shaping, reflecting and enforcing cultural ideas and experiences and reportage of COVID-related death and bereavement illuminates public percepti...
Abstract: Background:News media create a sense-making narrative, shaping, reflecting and enforcing cultural ideas and experiences. Reportage of COVID-related death and bereavement illuminates public percepti...
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TL;DR: Four clear risk factors were found for poorer end-of-life care and pandemic-related challenges in bereavement: place, cause and expectedness of death, and relationship to the deceased.
Abstract: Background: Experiences of end-of-life care and early bereavement during the COVID-19 pandemic are poorly understood. Aim: To identify clinical and demographic risk factors for sub-optimal end-of-life care and pandemic-related challenges prior to death and in early bereavement, to inform clinical practice, policy and bereavement support. Design: Online national survey of adults bereaved in the UK (deaths between 16 March 2020 and 2 January 2021), recruited via media, social media, national associations and organisations. Setting/participants: 711 participants, mean age 49.5 (SD 12.9, range 18–90). 628 (88.6%) were female. Mean age of the deceased was 72.2 (SD 16.1, range miscarriage to 102 years). 311 (43.8%) deaths were from confirmed/suspected COVID-19. Results: Deaths in hospital/care home increased the likelihood of poorer experiences at the end of life; for example, being unable to visit or say goodbye as wanted (p < 0.001). COVID-19 was also associated with worse experiences before and after death; for example, feeling unsupported by healthcare professionals (p < 0.001), social isolation/loneliness (OR = 0.439; 95% CI: 0.261–0.739), and limited contact with relatives/friends (OR = 0.465; 95% CI: 0.254–0.852). Expected deaths were associated with a higher likelihood of positive end-of-life care experiences. The deceased being a partner or child also increased the likelihood of positive experiences, however being a bereaved partner strongly increased odds of social isolation/loneliness, for example, OR = 0.092 (95% CI: 0.028–0.297) partner versus distant family member. Conclusions: Four clear risk factors were found for poorer end-of-life care and pandemic-related challenges in bereavement: place, cause and expectedness of death, and relationship to the deceased.
23 citations
TL;DR: In this paper , the authors analyzed qualitative data from two independent UK-wide online surveys to describe the experiences of 881 people bereaved during the COVID-19 pandemic and 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.
Abstract: 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.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.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.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.
11 citations
TL;DR: In this article , the lens of vulnerability is used to investigate how disparities in technology adoption affect activities of daily living and how the lifestyles of socially vulnerable populations have changed during the COVID-19 global pandemic.
8 citations
TL;DR: The priorities identified in this study represent a wide range of important emerging areas in the fields of digital health, personalized medicine, and data science, and human-centered design and robust governance systems should be considered in future research.
Abstract: Background Developments in digital health have the potential to transform the delivery of health and social care to help citizens manage their health. Currently, there is a lack of consensus about digital health research priorities in palliative care and a lack of theories about how these technologies might improve care outcomes. Therefore, it is important for health care leaders to identify innovations to ensure that an increasingly frail population has appropriate access to palliative care services. Consequently, it is important to articulate research priorities as the first step in determining how finite resources should be allocated to a field saturated with rapidly developing innovation. Objective The aim of this study is to identify research priority areas for digital health in palliative care. Methods We selected digital health trends, most relevant to palliative care, from a list of emerging trends reported by a leading institute of quantitative futurists. We conducted 2 rounds of the Delphi questionnaire, followed by a consensus meeting and public engagement workshop to establish a final consensus on research priorities for digital technology in palliative care. We used the views of public representatives to gain their perspectives on the agreed priorities. Results A total of 103 experts (representing 11 countries) participated in the first Delphi round. Of the 103 experts, 55 (53.3%) participated in the second round. The final consensus meetings were attended by 10.7% (11/103) of the experts. We identified 16 priority areas, which involved many applications of technologies, including care for patients and caregivers, self-management and reporting of diseases, education and training, communication, care coordination, and research methodology. We summarized the priority areas into eight topics: big data, mobile devices, telehealth and telemedicine, virtual reality, artificial intelligence, smart home, biotechnology, and digital legacy. Conclusions The priorities identified in this study represent a wide range of important emerging areas in the fields of digital health, personalized medicine, and data science. Human-centered design and robust governance systems should be considered in future research. It is important that the risks of using these technologies in palliative care are properly addressed to ensure that these tools are used meaningfully, wisely, and safely and do not cause unintentional harm.
8 citations
TL;DR: The authors argue that people working in healthcare experience grief professionally as well as personally and societally, and that attitudinal shifts are needed, argues Lucy Selman, to improve access to formal and informal support and make grief a less lonely experience.
Abstract: People working in healthcare experience grief professionally as well as personally and societally. Attitudinal shifts are needed, argues Lucy Selman, to improve access to formal and informal support and make grief a less lonely experience. Doctors’ openness and willingness to show vulnerability could help
7 citations
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TL;DR: The rationale is given as to why this model was deemed necessary and how it was designed to overcome limitations of earlier models of adaptive coping with loss to put the model to stringent empirical test.
Abstract: The Dual Process Model of Coping with Bereavement (DPM; Stroebe & Schut, 1999) is described in this article. The rationale is given as to why this model was deemed necessary and how it was designed to overcome limitations of earlier models of adaptive coping with loss. Although building on earlier theoretical formulations, it contrasts with other models along a number of dimensions which are outlined. In addition to describing the basic parameters of the DPM, theoretical and empirical developments that have taken place since the original publication of the model are summarized. Guidelines for future research are given focusing on principles that should be followed to put the model to stringent empirical test.
598 citations
TL;DR: A systematic review of the literature on predictors of complicated grief (CG) found perceived social support played a key role after death, along with cognitive appraisals and high distress at the time of the death.
Abstract: A systematic review of the literature on predictors of complicated grief (CG) was undertaken with the aim of clarifying the current knowledge and to inform future planning and work in CG following bereavement. Predictors of CG prior to the death include previous loss, exposure to trauma, a previous psychiatric history, attachment style, and the relationship to the deceased. Factors associated with the death include violent death, the quality of the caregiving or dying experience, close kinship relationship to the deceased, marital closeness and dependency, and lack of preparation for the death. Perceived social support played a key role after death, along with cognitive appraisals and high distress at the time of the death. Inconsistent definitions of CG and measurement tools were noted in the earlier studies reviewed. Limitations identified in the studies included use of cross-sectional designs, heterogeneous samples, high attrition, demographic differences between cases and controls, differences in length of time since death, and differences in types of death experienced. Notwithstanding these limitations, some consistent findings have emerged. Further research into conceptualizations of CG in terms of attachment theory and constructivist and cognitive-behavioral concepts of finding purpose and meaning after bereavement is warranted.
459 citations
TL;DR: The relationship of the COVID-19 pandemic to anticipatory grief, disenfranchised grief, and complicated grief for individuals, families, and their providers is described and resources for healthcare providers are provided.
420 citations
TL;DR: End-of-life practices, communication and loneliness in bereaved relatives may be amenable to improvements and end- of-life care and communication in the ICU are associated with the prevalence of complicated grief.
Abstract: An increased proportion of deaths occur in the intensive care unit (ICU).
We performed this prospective study in 41 ICUs to determine the prevalence and determinants of complicated grief after death of a loved one in the ICU. Relatives of 475 adult patients were followed up. Complicated grief was assessed at 6 and 12 months using the Inventory of Complicated Grief (cut-off score >25). Relatives also completed the Hospital Anxiety and Depression Scale at 3 months, and the Revised Impact of Event Scale for post-traumatic stress disorder symptoms at 3, 6 and 12 months. We used a mixed multivariate logistic regression model to identify determinants of complicated grief after 6 months.
Among the 475 patients, 282 (59.4%) had a relative evaluated at 6 months. Complicated grief symptoms were identified in 147 (52%) relatives. Independent determinants of complicated grief symptoms were either not amenable to changes (relative of female sex, relative living alone and intensivist board certification before 2009) or potential targets for improvements (refusal of treatment by the patient, patient died while intubated, relatives present at the time of death, relatives did not say goodbye to the patient, and poor communication between physicians and relatives).
End-of-life practices, communication and loneliness in bereaved relatives may be amenable to improvements.
End-of-life care and communication in the ICU are associated with the prevalence of complicated grief
209 citations
TL;DR: The good death concept now holds a diversity of definitions and meanings that unify around the ideal of dying with dignity, peacefulness, preparedness, awareness, adjustment and acceptance as mentioned in this paper.
Abstract: This paper aims to describe and analyse the ideology of the 'good death'; an ideology central to the modern hospice movement and underpinning many of the challenges to the medical management of dying and death. The development of the concept of the 'good death' will be traced from the work of the French historian, Aries, through the influential writings of Kubler-Ross, to the contemporary contributions within the sociology of dying and death. The good death concept now holds a diversity of definitions and meanings that unify around the ideal of dying with dignity, peacefulness, preparedness, awareness, adjustment and acceptance. The paper has as a central concern the dominance of the 'good death' ideology, leading to the labelling of 'good' and 'bad' patients, and consequent attempts by caregivers to shape the lives of dying people. This paper suggests that the ideology of the good death legitimates a new form of social control within which socially approved dying and death are characterized by proscribed...
196 citations