Factors Associated With Higher Levels of Grief and Support Needs Among People Bereaved During the Pandemic: Results from a National Online Survey.

We identified factors associated with higher levels of grief and support needs among 711 people bereaved during the COVID-19 pandemic in the UK (deaths 16 March 2020-2 January 2021). An online survey assessed grief using the Adult Attitude to Grief (AAG) scale, which calculates an overall index of vulnerability (IOV) (range 0-36), and practical and emotional support needs in 13 domains. Participants' mean age was 49.5 (SD 12.9); 628 (88.6%) female. Mean age of deceased 72.2 (SD 16.1). 311 (43.8%) deaths were from confirmed/suspected COVID-19. High overall levels of grief and support needs were observed; 28.2% exhibited severe vulnerability (index of vulnerability ≥24). Grief and support needs were higher for close relationships with the deceased (vs. more distant) and reported social isolation and loneliness (p < 0.001), and lower when age of deceased was above 40-50. Other associated factors were place of death and health professional support post-death (p < 0.05).

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

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.

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.

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/guardian 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-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 children's existing mental health problems. Schools and bereavement organisations' 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.

‘There is nowhere to place the anger’: accounts of bereavement experiences during the COVID-19 pandemic

IntroductionThe Covid-19 pandemic has been a mass bereavement event, causing major disruption to end-of-life, grieving and coping processes. Based on their Dual Process Model (DPM), Stroebe and Schut have identified pandemic-specific risk factors for poor bereavement outcomes and categorised these in terms of disruptions to loss-oriented and restoration-oriented coping processes which grieving people naturally oscillate between. Loss-oriented coping involves focussing on one’s loved one and their death, while restoration-oriented coping involves continuing with daily life and distracting oneself from one’s grief.AimsTo explore and describe bereavement experiences during the pandemic, relating our findings to the constructs of the DPM.MethodTwo independent online surveys were disseminated UK-wide via social media platforms and community and charitable organisations. They captured end-of-life and bereavement experiences (to all causes of death) from March 2020 to January 2021. Free-text data were analysed thematically, using the DPM as an analytic lens.ResultsSix main themes were identified: troubled and traumatic deaths;disrupted mourning, memorialisation and difficulties in death-related administration;mass bereavement, media and societal responses and the ongoing threat of the virus;grieving and coping (alone and with others);workplace and employment difficulties;and accessing health and social care support. Examples of loss-oriented stressors were being unable to visit or say goodbye and restricted funeral and memorialisation practices, leading to guilt and anger. Restoration-oriented stressors included severely restricted social networks and support systems, which affected peoples’ ability to cope.ConclusionThese results highlight significant disruptions to end-of-life, death and mourning practices, as well as usual coping mechanisms and support systems, during the Covid-19 pandemic. The DPM provides a useful framework for conceptualizing the additional challenges associated with pandemic bereavement and their impact on grieving and mental health.ImpactRecommendations are made for statutory, private and third sector organisations for improving experiences of people bereaved during this and future pandemics.

Parents’ accounts of the grief experiences and support needs of children and young people bereaved during the COVID-19 pandemic: results from a UK-wide online survey

IntroductionMany children and young people have experienced the death of close family members during the Covid-19 pandemic, whilst also facing unprecedented disruption to their daily routines and support networks.AimsThis study investigated their bereavement experiences and support needs as described by their parents/guardians.MethodWe disseminated a UK-wide online survey through social media platforms and community/charitable organisations, capturing the grief experiences of adults bereaved during the pandemic. Parent/guardian free-text responses (N=106) to a question on their child(ren)’s support needs were analysed thematically.ResultsThree 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 specific challenges include the impacts of not being able to be with 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 coping and grief-related communication within families, but some parents also described difficulties relating to their own grief and children’s pre-existing mental health problems. The important role of schools and bereavement organisations in providing specialist support was valued, but there was evidence of unmet need and difficulties accessing bereavement and mental health support.ConclusionChildren and young people have faced additional strains and challenges associated with pandemic bereavement, with some requiring specialist bereavement or mental health support.ImpactThis study provides insight into how children and young people experienced the death of a close family member during the pandemic. We recommend initiatives that facilitate open communication within family, peer and school settings, adequate resourcing of school and community-based specialist services, and increased information and signposting to support.

Support needs and barriers to accessing support: Baseline results of a mixed-methods national survey of people bereaved during the COVID-19 pandemic.

BACKGROUND: The COVID-19 pandemic is a mass bereavement event which has profoundly disrupted grief experiences. Understanding support needs and access to support among people bereaved at this time is crucial to ensuring appropriate bereavement support infrastructure. AIM: To investigate grief experiences, support needs and use of formal and informal bereavement support among people bereaved during the pandemic. DESIGN: Baseline results from a longitudinal survey. Support needs and experiences of accessing support are reported using descriptive statistics and thematic analysis of free-text data. SETTING/PARTICIPANTS: 711 adults bereaved in the UK between March and December 2020, recruited via media, social media, national associations and community/charitable organisations. RESULTS: High-level needs for emotional support were identified. Most participants had not sought support from bereavement services (59%, n = 422) or their General-Practitioner (60%, n = 428). Of participants who had sought such support, over half experienced difficulties accessing bereavement services (56%, n = 149)/General-Practitioner support (52%, n = 135). About 51% reported high/severe vulnerability in grief; among these, 74% were not accessing bereavement or mental-health services. Barriers included limited availability, lack of appropriate support, discomfort asking for help and not knowing how to access services. About 39% (n = 279) experienced difficulties getting support from family/friends, including relational challenges, little face-to-face contact and disrupted collective mourning. The perceived uniqueness of pandemic bereavement and wider societal strains exacerbated their isolation. CONCLUSIONS: People bereaved during the pandemic have high levels of support needs alongside difficulties accessing support. We recommend increased provision and tailoring of bereavement services, improved information on support options and social/educational initiatives to bolster informal support and ameliorate isolation.

6 End of life and bereavement experiences during the COVID-19 pandemic: Interim results from a national survey of bereaved people

BackgroundCOVID-19 represents a mass bereavement event, with 80,000+ excess UK deaths. The unprecedented clinical and social restrictions are potential risk factors for poor bereavement outcomes. This study investigates the bereavement experiences, support needs and support use of people bereaved during the pandemic.MethodsInterim findings from the first round of a mixed methods longitudinal survey of people bereaved in the UK since 16March 2020. The survey was disseminated via media, social media, national associations and community/charitable organisations. Grief was assessed using the Adult Attitude to Grief Scale.Results532 bereaved people participated (91% female). Place of death: hospital (55%), home (22%), care home (15%), hospice (5%);46% of deaths were confirmed/suspected COVID-19. Experiences of end of life care varied: 23% were ‘never’ involved in decisions about their loved one’s care, 36% felt ‘not at all’ supported by healthcare professionals after the death, 51% were not provided with information about bereavement support. Respondents reported high levels of problems specific to the pandemic bereavement context (e.g. 56% unable to visit prior to death, 67% social isolation and loneliness). Over half of participants demonstrated ‘severe’ (28%) or ‘high’ (24%) levels of vulnerability in grief, and support needs were high/fairly high in six psycho-emotional domains (51% to 62%). COVID-19 deaths were associated with higher levels of bereavement problems (p<0.05), grief vulnerability (p<0.05) and support needs (P< 0.001) compared to other causes of death. 21% of those with ‘severe’ vulnerability were accessing individual counselling, compared with 23% overall. Barriers to accessing professional support included long waiting lists, lack of appropriate support, feeling uncomfortable asking for/not knowing how to access help. 41% reported difficulties getting support from family/friends.ConclusionsPeople bereaved during the pandemic experience exceptionally difficult circumstances at the end of life and during bereavement, including unmet needs for social and professional support. We recommend improved communication with families at the end of life, enabling contact with patients as far as possible, and better support after a death. This includes increased information about and investment in bereavement support services as well as flexible ‘support bubble’ arrangements for the recently bereaved.

Personal protective equipment during the COVID-19 crisis: a snapshot and recommendations from the frontline of a university teaching hospital.

AIMS: The adequate provision of personal protective equipment (PPE) for healthcare workers has come under considerable scrutiny during the COVID-19 pandemic. This study aimed to evaluate staff awareness of PPE guidance, perceptions of PPE measures, and concerns regarding PPE use while caring for COVID-19 patients. In addition, responses of doctors, nurses, and other healthcare professionals (OHCPs) were compared. METHODS: The inclusion criteria were all staff working in clinical areas of the hospital. Staff were invited to take part using a link to an online questionnaire advertised by email, posters displayed in clinical areas, and social media. Questions grouped into the three key themes - staff awareness, perceptions, and concerns - were answered using a five-point Likert scale. The Kruskal-Wallis test was used to compare results across all three groups of staff. RESULTS: Overall, 315 staff took part in our study. There was a high awareness of PPE guidance at 84.4%, but only 52.4% of staff reported adequate PPE provision. 67.9% were still keen to come to work, despite very high levels of anxiety relating to contracting COVID-19 despite wearing PPE. Doctors had significantly higher ratings for questions relating to PPE awareness compared to other staff groups, while nursing staff and OHCPs had significantly higher levels of anxiety compared to doctors in relation to PPE and contracting COVID-19 (p < 0.05 using a Kruskal-Wallis test). CONCLUSION: We believe four recommendations are key to improve PPE measures and decrease anxiety: 1) nominated ward/department PPE champions; 2) anonymized reporting for PPE concerns; 3) formal PPE education sessions; and 4) drop-in counselling sessions for staff. We hope the insight and recommendations from this study can improve the PPE situation and maintain the health and wellbeing of the clinical work force, in order to care for COVID-19 patients safely and effectively.