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.

BackgroundResearch suggests that there may be bereavement experiences and support needs which are specific to family caregivers providing end of life care (EoLC), although this remains an under-researched area. This paper focuses on themes relating to bereavement which were derived from an analysis of free text survey responses collected in a research priority setting exercise for palliative and EoLC.MethodsThe priority setting exercise involved a public survey, designed to generate research priorities. Rather than identify research topics, many people instead described their experiences and raised more general questions relating to palliative and end of life care. To explore these experiences and perspectives a supplementary thematic analysis was conducted on the survey responses. 1403 respondents took part, including patients, current and bereaved carers, health and social care professionals, volunteers and members of the public.ResultsSeveral grief issues were identified, which seem specific to the experiences of family caregivers. Responses demonstrated a relationship between death experiences, feelings of guilt and bereavement outcomes for some family caregivers, as well as caregiver experiences of a “void” created by the withdrawal of professional support after death. Communication and support needs were also identified by participants.ConclusionThis analysis provides further evidence of some of the specific effects that caring for a loved one at the end of life can have on bereavement experiences. Finding ways of improving communication around the time of death and effective follow up approaches post death could help to address some of these issues.

BackgroundFamily carers play an essential role in providing end-of-life care to their relatives but have been found to experience uncertainty and a lack of confidence in fulfilling their caregiving roles, prompting recent calls for educational or information based resources to be developed for carers.MethodsWe carried out four focus groups with Clinical Nurse Specialists, healthcare assistants, former and current carers at a hospice in the UK, to explore the information and support needs of family carers.ResultsOur findings support previous research by highlighting a number of care situations where carers experience uncertainty and could seemingly benefit from greater information or instruction. Three main themes were identified which reflected carer experiences and needs in relation to potential information giving or educational interventions. These have been described as the knowledge and competence of carers; the preparedness of carers and low levels of carer identification with, and confidence in their roles as ‘carers’, which influences help seeking behaviours; and in turn how potential supportive interventions might be received by carers.ConclusionsFamily carers experience multiple needs for information and education, but meeting these needs remains a challenge. Our results suggest three domains which could underpin this type of intervention: developing knowledge and competence; facilitating preparedness; supporting role recognition and confidence building. We recommend an integrated information giving approach which addresses these domains by combining a resource pack for carers with a more explicit acknowledging role for health professionals. Together these could provide key information and also build confidence amongst family carers to ask for further support and advice as needed.