The effect of caring on post-bereavement outcome: Research gaps and practice priorities

摘要

Family caregivers are the primary caregivers of family members over the course of illness. Some caregiversnexhibit elevated levels of distress following the death of the person for whom they were caring. Despite thenpractical relevance for providing supports and services to caregivers and families, pre- and postbereavement,nthe effect of caregiving on bereavement is obscured. In examining the research literature onncaregiving and bereavement, three methodological limitations were identified – caregivers’ perspectivesnon preparing for the death of the person for whom they were caring is typically not assessed; the effect ofncaring on post-death adjustment tends to be assessed qualitatively, cross-sectionally, and retrospectively;nand there is a lack of adequate comparison groups. This paper highlights the need to address twonimportant gaps in understanding the effects of caregiving and bereavement: (1) caregivers’nunderstandings and experiences of the anticipating and preparing for the death of the person for whomnthey are caring, and (2) the relationship between caregivers’ pre-death grief and distress and post-deathnadjustment. Caregivers relieve significant costs from the health system, and improved support, pre- andnpost-bereavement, will continue to benefit them as well as society. Without significant research investment,npalliative care services will continue to operate without a suitable evidence base to support theirnbereavement care efforts.