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 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.