Virtual consultations: The experience of Oncology and Palliative care healthcare professionals ‘One size doesn't fit all'

IntroductionTo maintain continuity of care during the Covid-19 pandemic, virtual consultations (VC) became the mainstay of patient practitioner interactions. Prior to this, little was understood regarding healthcare professionals' (HCP) experiences in translating their care to this modality.AimExploration of oncology and palliative care HCP perspectives on VC, the role of VC in varying stages of the treatment and management of patient care, and the future role of VC in patient care.MethodA cross sectional mixed methodology observational study of oncology and palliative care HCPs, analysed via an inductive thematic approach.Results87 surveys completed within a one-month period. Three master themes were identified. Personal, professional, and familial factors included factors of patient age, illness and VC skill in influencing HCPs' experience of VC. Relationships and connection highlighted the influence of VC in empowering patients, the importance of a therapeutic relationship. Here, there was a perceived loss in these domains with VC. Significant challenges were felt in sharing bad news and having challenging conversations. Many survey respondents emphasized that they preferred to have first time consultations face-to-face, and not virtually. Within the domain of logistical and practical implications reduced travel and increased accessibility were seen as a benefit of VC. The inability to examine patients and concerns regarding missing clinical signs was emphasised as a significant barrier, alongside the challenges faced with sometimes failing technology.ConclusionVCs have a stronger role for those patients who are already known to professionals, when prior relationships have already been developed, and here they are perceived as practical and beneficial. VC for difficult discussions and for unstable patients were felt to be inadequate. Triaging patients with regard to suitability prior to offering VCs, with emphasis on the importance of patient choice, were seen as priority areas in this new era of VCs.

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.

Grieving during COVID-19: exploring the lived experiences of people bereaved during the first two waves of the pandemic

IntroductionThe COVID-19 pandemic has had a huge impact on all aspects of life. The high number of deaths and bereavements increased demand on already stretched services, whilst the unique circumstances caused by enforced social distancing meant that people bereaved at this time faced many additional challenges and potentially problematic grief trajectories.AimsTo explore in depth people's lived experiences of bereavement during the Covid-19 pandemic, their adaptation and coping during this time, and the effect of informal and formal sources of bereavement support .MethodsSemi-structured longitudinal telephone interviews were conducted with people bereaved during the first 10 months of the pandemic (March to December 2020), purposively sampled from a cohort of survey participants. Interview transcripts were analysed thematically.Results24 participants (19 female;5 men) took part in a first interview and 15 in a follow up interview, approximately four months later. Five major themes were identified: End of life experiences;Funerals and memorialisation;Grieving and psychological impacts;Coping and adaptation and Sources of support. Many challenges relating to the pandemic context were identified, including restrictions to end of life and memorialisation arrangements, dealing with personal affairs, and lack of support. Such experiences negatively impacted individual grieving and wellbeing, in particular feelings of isolation and guilt surrounding lack of contact with the deceased. Participants experienced difficulties accessing services, and sometimes received support that was not appropriate for their particular situations and needs. Despite these difficulties, some people demonstrated remarkable resilience, and ability to cope and find meaning.ConclusionsPeople bereaved in the COVID-19 pandemic have navigated grief and bereavement through exceptionally challenging circumstances, often lacking the informal and formal support needed to help them cope.ImpactThese insights can be used to help improve the care and support provided to bereaved people throughout their bereavement journeys.

'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.

Before the 2020 Pandemic: an observational study exploring public knowledge, attitudes, plans, and preferences towards death and end of life care in Wales.

BACKGROUND: Understanding public attitudes towards death and dying is important to inform public policies around End of Life Care (EoLC). We studied the public attitudes towards death and dying in Wales. METHODS: An online survey was conducted in 2018. Social media and the HealthWiseWales platform were used to recruit participants. Data were analysed using descriptive statistics and thematic analysis. RESULTS: 2,210 people participated. Loss of independence (84%), manner of death, and leaving their beloved behind were the biggest fears around death and dying. In terms of EoLC, participants sought timely access to care (84%) and being surrounded by loved ones (62%). Being at home was less of a priority (24%). Only 50% were familiar with Advance Care Planning (ACP). A lack of standard procedures as well as of support for the execution of plans and the ability to revisit those plans hindered uptake. The taboo around death conversations, the lack of opportunities and skills to initiate discussion, and personal fear and discomfort inhibited talking about death and dying. 72% felt that we do not talk enough about death and dying and advocated normalising talking by demystifying death with a positive approach. Health professionals could initiate and support this conversation, but this depended on communication skills and manageable workload pressure. Participants encouraged a public health approach and endorsed the use of: a) social media and other public platforms, b) formal education, c) formal and legal actions, and d) signposting and access to information. CONCLUSIONS: People are ready to talk about death and dying and COVID-19 has increased awareness. A combination of top-down and bottom-up initiatives across levels and settings can increase awareness, knowledge, and service-utilisation-drivers to support health professionals and people towards shared decisions which align with people's end of life wishes and preferences.

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.