Caregiving burden, receipt of palliative care, and the use of bereavement support: secondary analysis of population-based data

Abstract Background The levels of support needs among people bereaved due to cancer are high; however, bereavement support services are underutilised. Reasons are unknown. We aimed to examine the relationship of caregiving burden and involvement of palliative care with the utilisation of formal bere...

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Main Authors: Maja Furlan de Brito, Lucy E. Selman, Natalia Calanzani, Jonathan Koffman, Irene J. Higginson, Barbara Gomes
Format: Article
Language:English
Published: BMC 2025-04-01
Series:BMC Palliative Care
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Online Access:https://doi.org/10.1186/s12904-025-01705-6
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author Maja Furlan de Brito
Lucy E. Selman
Natalia Calanzani
Jonathan Koffman
Irene J. Higginson
Barbara Gomes
author_facet Maja Furlan de Brito
Lucy E. Selman
Natalia Calanzani
Jonathan Koffman
Irene J. Higginson
Barbara Gomes
author_sort Maja Furlan de Brito
collection DOAJ
description Abstract Background The levels of support needs among people bereaved due to cancer are high; however, bereavement support services are underutilised. Reasons are unknown. We aimed to examine the relationship of caregiving burden and involvement of palliative care with the utilisation of formal bereavement support by family carers of people who died of cancer. Methods Secondary analysis of population-based mortality follow-back study (QUALYCARE) with bereaved relatives of adults who registered the death of an adult due to cancer and involved in caregiving. We ran a multivariate logistic regression to determine whether caregiving burden and palliative care involvement explain the utilisation of bereavement support. Results Out of 523 family members involved in caregiving (66% women, M age=59 (SD = 14), 43% spouses/partners, 41% adult children), 149 (28.8%) utilised formal bereavement support (73.8% women, M age=60 (SD = 14), 55% spouse/partner, 36% adult children). We found higher grief intensity (measured by the Texas Revised Inventory of Grief) than the reported population norms. Bivariate analysis confirmed the hypothesised associations. However, these were not retained in the multivariate model. Utilisation of bereavement support was associated with presence at the moment of death (OR 1.769, 95%CI = 1.044–2.994) and grief intensity (1.036, 95%CI = 1.015–1.058). Conclusions Subjective experiences such as grief intensity and being present at the moment of death are associated with the need for formal bereavement support, raising the issue of continuity of care for family carers into bereavement. Further research is warranted to better understand the complex relationships between caregiving, bereavement, and the role of palliative care in facilitating access to bereavement support.
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spelling doaj-art-6da66b477aa6488fb3f5292ce45f83342025-08-20T03:03:20ZengBMCBMC Palliative Care1472-684X2025-04-0124111110.1186/s12904-025-01705-6Caregiving burden, receipt of palliative care, and the use of bereavement support: secondary analysis of population-based dataMaja Furlan de Brito0Lucy E. Selman1Natalia Calanzani2Jonathan Koffman3Irene J. Higginson4Barbara Gomes5Faculty of Medicine, University of Coimbra, Azinhaga de Santa CombaPalliative and End of Life Care Research Group, Population Health Sciences, Bristol Medical School, University of BristolKing’s College London, Cicely Saunders Institute of Palliative Care, Policy and RehabilitationKing’s College London, Cicely Saunders Institute of Palliative Care, Policy and RehabilitationKing’s College London, Cicely Saunders Institute of Palliative Care, Policy and RehabilitationFaculty of Medicine, University of Coimbra, Azinhaga de Santa CombaAbstract Background The levels of support needs among people bereaved due to cancer are high; however, bereavement support services are underutilised. Reasons are unknown. We aimed to examine the relationship of caregiving burden and involvement of palliative care with the utilisation of formal bereavement support by family carers of people who died of cancer. Methods Secondary analysis of population-based mortality follow-back study (QUALYCARE) with bereaved relatives of adults who registered the death of an adult due to cancer and involved in caregiving. We ran a multivariate logistic regression to determine whether caregiving burden and palliative care involvement explain the utilisation of bereavement support. Results Out of 523 family members involved in caregiving (66% women, M age=59 (SD = 14), 43% spouses/partners, 41% adult children), 149 (28.8%) utilised formal bereavement support (73.8% women, M age=60 (SD = 14), 55% spouse/partner, 36% adult children). We found higher grief intensity (measured by the Texas Revised Inventory of Grief) than the reported population norms. Bivariate analysis confirmed the hypothesised associations. However, these were not retained in the multivariate model. Utilisation of bereavement support was associated with presence at the moment of death (OR 1.769, 95%CI = 1.044–2.994) and grief intensity (1.036, 95%CI = 1.015–1.058). Conclusions Subjective experiences such as grief intensity and being present at the moment of death are associated with the need for formal bereavement support, raising the issue of continuity of care for family carers into bereavement. Further research is warranted to better understand the complex relationships between caregiving, bereavement, and the role of palliative care in facilitating access to bereavement support.https://doi.org/10.1186/s12904-025-01705-6BereavementGriefPalliative careNeoplasmsFamilyCaregivers
spellingShingle Maja Furlan de Brito
Lucy E. Selman
Natalia Calanzani
Jonathan Koffman
Irene J. Higginson
Barbara Gomes
Caregiving burden, receipt of palliative care, and the use of bereavement support: secondary analysis of population-based data
BMC Palliative Care
Bereavement
Grief
Palliative care
Neoplasms
Family
Caregivers
title Caregiving burden, receipt of palliative care, and the use of bereavement support: secondary analysis of population-based data
title_full Caregiving burden, receipt of palliative care, and the use of bereavement support: secondary analysis of population-based data
title_fullStr Caregiving burden, receipt of palliative care, and the use of bereavement support: secondary analysis of population-based data
title_full_unstemmed Caregiving burden, receipt of palliative care, and the use of bereavement support: secondary analysis of population-based data
title_short Caregiving burden, receipt of palliative care, and the use of bereavement support: secondary analysis of population-based data
title_sort caregiving burden receipt of palliative care and the use of bereavement support secondary analysis of population based data
topic Bereavement
Grief
Palliative care
Neoplasms
Family
Caregivers
url https://doi.org/10.1186/s12904-025-01705-6
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