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

• Published in: Palliative medicine Vol. 35; no. 10; pp. 1985 - 1997
• Main Authors: Harrop, Emily, Goss, Silvia, Farnell, Damian, Longo, Mirella, Byrne, Anthony, Barawi, Kali, Torrens-Burton, Anna, Nelson, Annmarie, Seddon, Kathy, Machin, Linda, Sutton, Eileen, Roulston, Audrey, Finucane, Anne, Penny, Alison, Smith, Kirsten V, Sivell, Stephanie, Selman, Lucy E
• Format: Journal Article
• Language: English
• Published: London, England SAGE Publications 01.12.2021; Sage Publications Ltd
• Subjects: Access; Adult; Bereavement; Coronaviruses; COVID-19; Discomfort; Emotional support; Friendship; Grief; Health services; Humans; Infrastructure; Mental health; Mixed methods research; Mourning; Original; Palliative care; Pandemics; Polls & surveys; SARS-CoV-2; Social media; Social Support; Uniqueness; social support; bereavement services; Bereavement; coronavirus infections; pandemics; grief
• ISSN: 0269-2163; 1477-030X
• DOI: 10.1177/02692163211043372

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.