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

Emily Harrop; Silvia Goss; Damian Farnell; Mirella Longo; Anthony Byrne; Kali Barawi; Anna Torrens-Burton; Annmarie Nelson; Kathy Seddon; Linda Machin; Eileen J Sutton; Audrey Roulston; Anne Finucane; Alison Penny; Kirsten V. Smith; Stephanie Sivell; Lucy E Selman

doi:10.1177/02692163211043372

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

Emily Harrop^*, Silvia Goss, Damian Farnell, Mirella Longo, Anthony Byrne, Kali Barawi, Anna Torrens-Burton, Annmarie Nelson, Kathy Seddon, Linda Machin, Eileen J Sutton, Audrey Roulston, Anne Finucane, Alison Penny, Kirsten V. Smith, Stephanie Sivell, Lucy E Selman

^*Corresponding author for this work

Research output: Contribution to journal › Article (Academic Journal) › peer-review

64 Citations (Scopus)

217 Downloads (Pure)

Abstract

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-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). 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. 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.

Original language	English
Pages (from-to)	1985-1997
Number of pages	13
Journal	Palliative Medicine
Volume	35
Issue number	10
Early online date	22 Oct 2021
DOIs	https://doi.org/10.1177/02692163211043372
Publication status	Published - 1 Dec 2021

Bibliographical note

Funding Information:
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was funded by the UKRI/ESRC (Grant No. ES/V012053/1). The project was also supported by the Marie Curie core grant funding to the Marie Curie Research Centre, Cardiff University (grant no. MCCC-FCO-11-C). E.H., A.N., A.B., S.S. and M.L. posts are supported by the Marie Curie core grant funding (grant no. MCCC-FCO-11-C). ATB is funded by Welsh Government through Health and Care Research Wales. K.V.S. is funded by the Medical Research Council (MR/V001841/1).The funder was not involved in the study design, implementation, analysis or interpretation of results and has not contributed to this manuscript.

Publisher Copyright:
© The Author(s) 2021.

Research Groups and Themes

Palliative and End of Life Care

Keywords

bereavement
grief
pandemics
coronavirus infections
social support
bereavement services

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

Access to Document

10.1177/02692163211043372

Full-text PDF (final published version)
This is the final published version of the article (version of record). It first appeared online via SAGE Publications at https://doi.org/10.1177/02692163211043372 . Please refer to any applicable terms of use of the publisher.
Final published version, 1.02 MBLicence: CC BY

Handle.net

Persistent link

Embargoed Document

Full-text PDF (author’s accepted manuscript)
Accepted author manuscript, 576 KB
Licence: CC BY-ND

Cite this

Harrop, E., Goss, S., Farnell, D., Longo, M., Byrne, A., Barawi, K., Torrens-Burton, A., Nelson, A., Seddon, K., Machin, L., Sutton, E. J., Roulston, A., Finucane, A., Penny, A., Smith, K. V., Sivell, S., & Selman, L. E. (2021). Support needs and barriers to accessing support: Baseline results of a mixed-methods national survey of people bereaved during the COVID-19 pandemic. Palliative Medicine, 35(10), 1985-1997. https://doi.org/10.1177/02692163211043372

@article{4f304eab35354fae9426ea33d971a7a8,

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

abstract = "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-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). 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. 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.",

keywords = "bereavement, grief, pandemics, coronavirus infections, social support, bereavement services",

author = "Emily Harrop and Silvia Goss and Damian Farnell and Mirella Longo and Anthony Byrne and Kali Barawi and Anna Torrens-Burton and Annmarie Nelson and Kathy Seddon and Linda Machin and Sutton, \{Eileen J\} and Audrey Roulston and Anne Finucane and Alison Penny and Smith, \{Kirsten V.\} and Stephanie Sivell and Selman, \{Lucy E\}",

note = "Funding Information: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was funded by the UKRI/ESRC (Grant No. ES/V012053/1). The project was also supported by the Marie Curie core grant funding to the Marie Curie Research Centre, Cardiff University (grant no. MCCC-FCO-11-C). E.H., A.N., A.B., S.S. and M.L. posts are supported by the Marie Curie core grant funding (grant no. MCCC-FCO-11-C). ATB is funded by Welsh Government through Health and Care Research Wales. K.V.S. is funded by the Medical Research Council (MR/V001841/1).The funder was not involved in the study design, implementation, analysis or interpretation of results and has not contributed to this manuscript. Publisher Copyright: {\textcopyright} The Author(s) 2021.",

year = "2021",

month = dec,

day = "1",

doi = "10.1177/02692163211043372",

language = "English",

volume = "35",

pages = "1985--1997",

journal = "Palliative Medicine",

issn = "0269-2163",

publisher = "SAGE Publications Ltd",

number = "10",

}

Harrop, E, Goss, S, Farnell, D, Longo, M, Byrne, A, Barawi, K, Torrens-Burton, A, Nelson, A, Seddon, K, Machin, L, Sutton, EJ, Roulston, A, Finucane, A, Penny, A, Smith, KV, Sivell, S & Selman, LE 2021, 'Support needs and barriers to accessing support: Baseline results of a mixed-methods national survey of people bereaved during the COVID-19 pandemic', Palliative Medicine, vol. 35, no. 10, pp. 1985-1997. https://doi.org/10.1177/02692163211043372

TY - JOUR

T1 - Support needs and barriers to accessing support

T2 - Baseline results of a mixed-methods national survey of people bereaved during the COVID-19 pandemic

AU - Harrop, Emily

AU - Goss, Silvia

AU - Farnell, Damian

AU - Longo, Mirella

AU - Byrne, Anthony

AU - Barawi, Kali

AU - Torrens-Burton, Anna

AU - Nelson, Annmarie

AU - Seddon, Kathy

AU - Machin, Linda

AU - Sutton, Eileen J

AU - Roulston, Audrey

AU - Finucane, Anne

AU - Penny, Alison

AU - Smith, Kirsten V.

AU - Sivell, Stephanie

AU - Selman, Lucy E

N1 - Funding Information: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was funded by the UKRI/ESRC (Grant No. ES/V012053/1). The project was also supported by the Marie Curie core grant funding to the Marie Curie Research Centre, Cardiff University (grant no. MCCC-FCO-11-C). E.H., A.N., A.B., S.S. and M.L. posts are supported by the Marie Curie core grant funding (grant no. MCCC-FCO-11-C). ATB is funded by Welsh Government through Health and Care Research Wales. K.V.S. is funded by the Medical Research Council (MR/V001841/1).The funder was not involved in the study design, implementation, analysis or interpretation of results and has not contributed to this manuscript. Publisher Copyright: © The Author(s) 2021.

PY - 2021/12/1

Y1 - 2021/12/1

N2 - 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-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). 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. 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.

AB - 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-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). 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. 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.

KW - bereavement

KW - grief

KW - pandemics

KW - coronavirus infections

KW - social support

KW - bereavement services

U2 - 10.1177/02692163211043372

DO - 10.1177/02692163211043372

M3 - Article (Academic Journal)

C2 - 34676792

SN - 0269-2163

VL - 35

SP - 1985

EP - 1997

JO - Palliative Medicine

JF - Palliative Medicine

IS - 10

ER -

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

Abstract

Bibliographical note

Research Groups and Themes

Keywords

UN SDGs

Access to Document

Handle.net

Embargoed Document

Fingerprint

Cite this