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 du...
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Published in | BMJ supportive & palliative care Vol. 11; no. Suppl 1; p. A3 |
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Language | English |
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BMJ Publishing Group LTD
01.03.2021
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Abstract | 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. |
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AbstractList | 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. |
Author | Carduff, Emma Sutton, Eileen Seddon, Kathy Roulston, Audrey Smith, Kirsten V Byrne, Anthony Nelson, Annmarie Mayland, Catriona Longo, Mirella Harrop, Emily Penny, Alison Wakefield, Donna Farnell, Damian Johnston, Bridget Goss, Silvia Finucane, Anne Burton, Anna Torrens Machin, Linda Selman, Lucy Sivell, Stephanie |
Author_xml | – sequence: 1 givenname: Emily surname: Harrop fullname: Harrop, Emily organization: Cardiff University, University of Bristol, Keele University, National Bereavement Alliance, Queens University Belfast, Marie Curie Hospice Glasgow, Marie Curie Hospice Edinburgh, Oxford University, University of Sheffield, North Tees and Hartlepool NHS Foundation Trust, University of Glasgow – sequence: 2 givenname: Lucy surname: Selman fullname: Selman, Lucy organization: Cardiff University, University of Bristol, Keele University, National Bereavement Alliance, Queens University Belfast, Marie Curie Hospice Glasgow, Marie Curie Hospice Edinburgh, Oxford University, University of Sheffield, North Tees and Hartlepool NHS Foundation Trust, University of Glasgow – sequence: 3 givenname: Damian surname: Farnell fullname: Farnell, Damian organization: Cardiff University, University of Bristol, Keele University, National Bereavement Alliance, Queens University Belfast, Marie Curie Hospice Glasgow, Marie Curie Hospice Edinburgh, Oxford University, University of Sheffield, North Tees and Hartlepool NHS Foundation Trust, University of Glasgow – sequence: 4 givenname: Anthony surname: Byrne fullname: Byrne, Anthony organization: Cardiff University, University of Bristol, Keele University, National Bereavement Alliance, Queens University Belfast, Marie Curie Hospice Glasgow, Marie Curie Hospice Edinburgh, Oxford University, University of Sheffield, North Tees and Hartlepool NHS Foundation Trust, University of Glasgow – sequence: 5 givenname: Annmarie surname: Nelson fullname: Nelson, Annmarie organization: Cardiff University, University of Bristol, Keele University, National Bereavement Alliance, Queens University Belfast, Marie Curie Hospice Glasgow, Marie Curie Hospice Edinburgh, Oxford University, University of Sheffield, North Tees and Hartlepool NHS Foundation Trust, University of Glasgow – sequence: 6 givenname: Silvia surname: Goss fullname: Goss, Silvia organization: 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Hartlepool NHS Foundation Trust, University of Glasgow – sequence: 9 givenname: Linda surname: Machin fullname: Machin, Linda organization: Cardiff University, University of Bristol, Keele University, National Bereavement Alliance, Queens University Belfast, Marie Curie Hospice Glasgow, Marie Curie Hospice Edinburgh, Oxford University, University of Sheffield, North Tees and Hartlepool NHS Foundation Trust, University of Glasgow – sequence: 10 givenname: Alison surname: Penny fullname: Penny, Alison organization: Cardiff University, University of Bristol, Keele University, National Bereavement Alliance, Queens University Belfast, Marie Curie Hospice Glasgow, Marie Curie Hospice Edinburgh, Oxford University, University of Sheffield, North Tees and Hartlepool NHS Foundation Trust, University of Glasgow – sequence: 11 givenname: Audrey surname: Roulston fullname: Roulston, Audrey organization: Cardiff University, University of Bristol, Keele University, National Bereavement Alliance, Queens University Belfast, Marie Curie Hospice Glasgow, Marie Curie Hospice Edinburgh, Oxford University, University of Sheffield, North Tees and Hartlepool NHS Foundation Trust, University of Glasgow – sequence: 12 givenname: Emma surname: Carduff fullname: Carduff, Emma organization: Cardiff University, University of Bristol, Keele University, National Bereavement Alliance, Queens University Belfast, Marie Curie Hospice Glasgow, Marie Curie Hospice Edinburgh, Oxford University, University of Sheffield, North Tees and Hartlepool NHS Foundation Trust, University of Glasgow – sequence: 13 givenname: Anne surname: Finucane fullname: Finucane, Anne organization: Cardiff University, University of Bristol, Keele University, National Bereavement Alliance, Queens University Belfast, Marie Curie Hospice Glasgow, Marie Curie Hospice Edinburgh, Oxford University, University of Sheffield, North Tees and Hartlepool NHS Foundation Trust, University of Glasgow – sequence: 14 givenname: Kirsten V surname: Smith fullname: Smith, Kirsten V organization: Cardiff University, University of Bristol, Keele University, National Bereavement Alliance, Queens University Belfast, Marie Curie Hospice Glasgow, Marie Curie Hospice Edinburgh, Oxford University, University of Sheffield, North Tees and Hartlepool NHS Foundation Trust, University of Glasgow – sequence: 15 givenname: Anna Torrens surname: Burton fullname: Burton, Anna Torrens organization: Cardiff University, University of Bristol, Keele University, National Bereavement Alliance, Queens University Belfast, Marie Curie Hospice Glasgow, Marie Curie Hospice Edinburgh, Oxford University, University of Sheffield, North Tees and Hartlepool NHS Foundation Trust, University of Glasgow – sequence: 16 givenname: Stephanie surname: Sivell fullname: Sivell, Stephanie organization: Cardiff University, University of Bristol, Keele University, National Bereavement Alliance, Queens University Belfast, Marie Curie Hospice Glasgow, Marie Curie Hospice Edinburgh, Oxford University, University of Sheffield, North Tees and Hartlepool NHS Foundation Trust, University of Glasgow – sequence: 17 givenname: Catriona surname: Mayland fullname: Mayland, Catriona organization: Cardiff University, University of Bristol, Keele University, National Bereavement Alliance, Queens University Belfast, Marie Curie Hospice Glasgow, Marie Curie Hospice Edinburgh, Oxford University, University of Sheffield, North Tees and Hartlepool NHS Foundation Trust, University of Glasgow – sequence: 18 givenname: Donna surname: Wakefield fullname: Wakefield, Donna organization: Cardiff University, University of Bristol, Keele University, National Bereavement Alliance, Queens University Belfast, Marie Curie Hospice Glasgow, Marie Curie Hospice Edinburgh, Oxford University, University of Sheffield, North Tees and Hartlepool NHS Foundation Trust, University of Glasgow – sequence: 19 givenname: Bridget surname: Johnston fullname: Johnston, Bridget organization: Cardiff University, University of Bristol, Keele University, National Bereavement Alliance, Queens University Belfast, Marie Curie Hospice Glasgow, Marie Curie Hospice Edinburgh, Oxford University, University of Sheffield, North Tees and Hartlepool NHS Foundation Trust, University of Glasgow – sequence: 20 givenname: Mirella surname: Longo fullname: Longo, Mirella organization: Cardiff University, University of Bristol, Keele University, National Bereavement Alliance, Queens University Belfast, Marie Curie Hospice Glasgow, Marie Curie Hospice Edinburgh, Oxford University, University of Sheffield, North Tees and Hartlepool NHS Foundation Trust, University of Glasgow |
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Copyright | Author(s) (or their employer(s)) 2021. No commercial re-use. See rights and permissions. Published by BMJ. 2021 Author(s) (or their employer(s)) 2021. No commercial re-use. See rights and permissions. Published by BMJ. |
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Snippet | BackgroundCOVID-19 represents a mass bereavement event, with 80,000+ excess UK deaths. The unprecedented clinical and social restrictions are potential risk... |
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SubjectTerms | Coronaviruses COVID-19 Grief Hospice care Palliative care Pandemics |
Title | 6 End of life and bereavement experiences during the COVID-19 pandemic: Interim results from a national survey of bereaved people |
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