Bereavement during COVID-19: findings from a UK-wide online survey on the use and perceived helpfulness of informal and formal support during the pandemic

IntroductionMillions became bereaved during the pandemic, with many facing challenges accessing support.AimsTo describe the use and helpfulness of different types of support in a cohort of people bereaved during the pandemic in the UK.MethodsA longitudinal survey of people bereaved during the pandemic over four time points. At 7- and 13-months post-bereavement (T2 and T3), participants rated the helpfulness of support used and described how they had been helped by this support.Results420 participants completed at least one follow-up survey (T2, T3 or both). Most respondents were female (88.3%) and had lost a parent (57.6%) or partner (24.3%), with 3.3% from a minoritised ethnic background. Support from family and friends, reported by 89.3% of participants, was rated as ‘quite helpful' (mean rating 4.3 out of 5), and included help with practical tasks, expressing feelings/sharing grief, remembering, feeling cared for and less isolated. The most commonly used form of other support was 1:1 support (e.g. counselling), used by 40.5% of participants, with an average helpfulness rating of 4.1, helping participants feel listened to and process their grief. Online community support, used by 31.0% of participants, was also rated ‘quite helpful' (3.9), enabling sharing with similar others, feeling understood and less alone. Informal and formal bereavement groups were rated as similarly helpful (4.2) while helplines and specialist mental health support were slightly less helpful (3.6) (used by 9.3%, 4.8%, 7.1% and 4.5% of participants, respectively).ConclusionsResults demonstrate the perceived benefits and helpfulness of different forms of bereavement support used during the pandemic.ImpactThese findings highlight the value of informal as well as formal support, particularly bereavement counselling. Policy makers must attend to the foundational and second tiers of the public health model of bereavement support, supporting communities as well as services.

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.

Co-designing personalised self-management support for people living with long Covid: The LISTEN protocol.

BACKGROUND: Long Covid is recognised as a complex condition characterised by multiple, interacting and fluctuating symptoms which impact everyday life in diverse ways. The extent of symptom clusters and variability supports interventions that can accommodate heterogeneity, such as personalised self-management support. This approach is also advocated by people living with long Covid and guidelines published by the UK's National Institute for Health and Care Excellence. Long Covid Personalised Self-managemenT support co-design and EvaluatioN (LISTEN) is one of 15 research projects funded by the UK's National Institute of Health Research long Covid research programme. LISTEN aims to work with people living with or recovered from long Covid to co-design self-management resources, and a training programme for rehabilitation practitioners to deliver personalised support. The intervention will focus on people not hospitalised for Covid. The protocol presented here details the co-design of the LISTEN intervention which, on completion, will be evaluated in a randomised controlled trial. METHODS: The study will utilise an Accelerated Experience-Based Co-Design approach, and involve 30 people from England and Wales with lived experience of long Covid, and 15 rehabilitation practitioners living with, or supporting people with, long Covid. Through online meetings, participants will share their stories of long Covid, their challenges and strategies to live better with or recover from long Covid, their priorities for self-management resources and the practitioner training andcreate, review and refine these resources and the training. Throughout, LISTEN will draw upon the UK standards of public involvement in research. DISCUSSION: If effective and cost-effective, the intervention will be available across the UK's National Health Service. The first of its kind, this study could make a difference to the lives of people with long Covid. To ensure impact, we have developed strategies to involve people from diverse backgrounds and mitigate potential barriers to involvement.

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.

Perceived threat of COVID-19, attitudes towards vaccination, and vaccine hesitancy: A prospective longitudinal study in the UK.

OBJECTIVES: Using the Health Belief Model as a conceptual framework, we investigated the association between attitudes towards COVID-19, COVID-19 vaccinations, and vaccine hesitancy and change in these variables over a 9-month period in a UK cohort. METHODS: The COPE study cohort (n = 11,113) was recruited via an online survey at enrolment in March/April 2020. The study was advertised via the HealthWise Wales research registry and social media. Follow-up data were available for 6942 people at 3 months (June/July 2020) and 5037 at 12 months (March/April 2021) post-enrolment. Measures included demographics, perceived threat of COVID-19, perceived control, intention to accept or decline a COVID-19 vaccination, and attitudes towards vaccination. Logistic regression models were fitted cross-sectionally at 3 and 12 months to assess the association between motivational factors and vaccine hesitancy. Longitudinal changes in motivational variables for vaccine-hesitant and non-hesitant groups were examined using mixed-effect analysis of variance models. RESULTS: Fear of COVID-19, perceived susceptibility to COVID-19, and perceived personal control over COVID-19 infection transmission decreased between the 3- and 12-month surveys. Vaccine hesitancy at 12 months was independently associated with low fear of the disease and more negative attitudes towards COVID-19 vaccination. Specific barriers to COVID-19 vaccine uptake included concerns about safety and efficacy in light of its rapid development, mistrust of government and pharmaceutical companies, dislike of coercive policies, and perceived lack of relaxation in COVID-19-related restrictions as the vaccination programme progressed. CONCLUSIONS: Decreasing fear of COVID-19, perceived susceptibility to the disease, and perceptions of personal control over reducing infection-transmission may impact future COVID-19 vaccination uptake.

Cohort profile: The UK COVID-19 Public Experiences (COPE) prospective longitudinal mixed-methods study of health and well-being during the SARSCoV2 coronavirus pandemic.

Public perceptions of pandemic viral threats and government policies can influence adherence to containment, delay, and mitigation policies such as physical distancing, hygienic practices, use of physical barriers, uptake of testing, contact tracing, and vaccination programs. The UK COVID-19 Public Experiences (COPE) study aims to identify determinants of health behaviour using the Capability, Opportunity, Motivation (COM-B) model using a longitudinal mixed-methods approach. Here, we provide a detailed description of the demographic and self-reported health characteristics of the COPE cohort at baseline assessment, an overview of data collected, and plans for follow-up of the cohort. The COPE baseline survey was completed by 11,113 UK adult residents (18+ years of age). Baseline data collection started on the 13th of March 2020 (10-days before the introduction of the first national COVID-19 lockdown in the UK) and finished on the 13th of April 2020. Participants were recruited via the HealthWise Wales (HWW) research registry and through social media snowballing and advertising (Facebook®, Twitter®, Instagram®). Participants were predominantly female (69%), over 50 years of age (68%), identified as white (98%), and were living with their partner (68%). A large proportion (67%) had a college/university level education, and half reported a pre-existing health condition (50%). Initial follow-up plans for the cohort included in-depth surveys at 3-months and 12-months after the first UK national lockdown to assess short and medium-term effects of the pandemic on health behaviour and subjective health and well-being. Additional consent will be sought from participants at follow-up for data linkage and surveys at 18 and 24-months after the initial UK national lockdown. A large non-random sample was recruited to the COPE cohort during the early stages of the COVID-19 pandemic, which will enable longitudinal analysis of the determinants of health behaviour and changes in subjective health and well-being over the course of the pandemic.

‘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.