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

  1. Emily Harrop
  2. Silvia Goss
  3. Damian Farnell
  4. Mirella Longo
  5. Anthony Byrne
  6. Kali Barawi
  7. Anna Torrens-Burton
  8. Annmarie Nelson
  9. Kathy Seddon
  10. Linda Machin
  11. Eileen Sutton
  12. Audrey Roulston
  13. Anne Finucane
  14. Alison Penny
  15. Kirsten V Smith
  16. Stephanie Sivell
  17. Lucy E Selman

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Abstract

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.

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  1. Version published to 10.1177/02692163211043372
  2. ScreenIT

    SciScore for 10.1101/2021.06.11.21258575: (What is this?)

    Please note, not all rigor criteria are appropriate for all manuscripts.

    Table 1: Rigor

    EthicsConsent: The initial section of the survey requested informed consent and details data protection (see Supplementary file 1).
    Sex as a biological variablenot detected.
    Randomizationnot detected.
    Blindingnot detected.
    Power Analysisnot detected.

    Table 2: Resources

    Software and Algorithms
    SentencesResources
    Statistical calculations were carried out using SPSS V26.
    SPSS
    suggested: (SPSS, RRID:SCR_002865)

    Results from OddPub: We did not detect open data. We also did not detect open code. Researchers are encouraged to share open data when possible (see Nature blog).

    Results from LimitationRecognizer: We detected the following sentences addressing limitations in the study:
    Strengths and weaknesses: This mixed-methods study will be the first to longitudinally investigate peoples’ experiences of bereavement support during the Covid-19 pandemic in the UK. The baseline quantitative data demonstrates the extent of the difficulties experienced by the bereaved, whilst explanatory qualitative data provide rich insights into participant experiences. However, lack of random sampling means that the survey is not representative and by recruiting mostly online we were less likely to reach the very old or other digitally marginalised groups. Despite significant efforts and targeted recruitment, people from minority ethnic backgrounds and men are underrepresented in the data. Despite this, group sizes were sufficient to enable comparisons (although not to the level of specific ethnic groups), with group-specific observations reported where relevant in our qualitative findings. Quantitative analysis of the effects of demographic and clinical characteristics on support use is forthcoming. Implications for research: This study includes follow-up surveys at c.7 and 13 months post-death, longitudinal qualitative interviews and research exploring the impact of the pandemic on voluntary sector bereavement services and their response. Although our interviews target underrepresented participants such as those from minority ethnic backgrounds, same-sex couples and men, further research with these groups is needed. Research exploring the needs of bereaved children and y...

    Results from TrialIdentifier: No clinical trial numbers were referenced.

    Results from Barzooka: We did not find any issues relating to the usage of bar graphs.

    Results from JetFighter: We did not find any issues relating to colormaps.

    Results from rtransparent:
    • Thank you for including a conflict of interest statement. Authors are encouraged to include this statement when submitting to a journal.
    • Thank you for including a funding statement. Authors are encouraged to include this statement when submitting to a journal.
    • No protocol registration statement was detected.

    Results from scite Reference Check: We found no unreliable references.

    About SciScore

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  3. Version published to 10.1101/2021.06.11.21258575v1 on medRxiv