Family caregivers are the primary caregivers of family members over the course of illness.Some caregivers exhibit elevated levels of distress following the death of the person for whom they were caring. Despite the practical relevance for providing supports and services to caregivers and families, pre-and post-bereavement, the effect of caregiving on bereavement is obscured. In examining the research literature on caregiving and bereavement, three methodological limitations were identified -caregivers' perspectives on preparing for the death of the person for whom they are caring is typically not assessed; the effect of caring on post-death adjustment tends to be assessed qualitatively, cross-sectionally, and retrospectively; and there is a lack of adequate comparison groups. This paper highlights the need to address two important gaps in understanding the effects of caregiving and bereavement: (1) caregivers' understandings and experiences of the anticipating and preparing for the death of the person for whom they are caring, and (2) the relationship between caregivers' pre-death grief and distress and post-death adjustment. Caregivers relieve significant costs from the health system, and improved support, pre-and postbereavement, will continue to benefit them as well as society. Without significant research investment, palliative care services will continue to operate without a suitable evidence base to support their bereavement care efforts. The experiences and needs of family caregivers during this time are relatively welldocumented. Notwithstanding potential benefits attained from caregiving such as the strengthening their relationship with the patient, the development of new skills, and spiritual growth 8 , and an increased appreciation for life, 9 family caregivers engage in care that may be financially costly, time consuming, physically demanding, and stigma inducing, and that usually impacts negatively on their ability to engage in social and recreational activities. [10][11][12][13] Needs include practical information, 14 emotional support, 15 economic assistance and housing support, 13 improved coordination of formal care and allied services, 16 and bereavement support, 17 while outcomes when engaging in care may include symptoms of psychiatric morbidity 18 and psychological distress; 19 these needs remain largely unmet by services. 20 Despite the practical relevance for providing supports and services to family caregivers, pre-and post-bereavement, the effect of caregiving on bereavement is less clear.
Keywords
Caring and bereavement 4This paper summarises what is known about the effects of family caregiving on bereavement outcome, and demonstrates that this knowledge is hampered by three serious methodological limitations. The implications for future research in addressing these limitations and developing an evidence-base for bereavement support in palliative care are outlined.
Limitations to Current Understandings of Caring and BereavementA recent review of the caregiving and bereavement li...