The Context of Care giving and Bereavement Adjustment in Late-Stage Cancer This application is a resubmission of an application in response to the FOA PAR-00-003: Small Grants for Behavioral Research in Cancer Control, and requests two years of support for a mixed-method study exploring the context of caregiving and bereavement among former caregivers of late-stage cancer patients. Many informal family caregivers do not recover from the strain of caregiving after bereavement, and may even deteriorate after the death of the patient. As the number of informal cancer caregivers has grown, the identification of the factors associated with complicated grief and physical morbidity after caregiving has become a priority in family survivorship research. This study proposes to shed light on the context of advanced cancer caregiving, with special attention paid to understanding factors associated with complicated grief among family caregivers after the death of an advanced cancer patient. The proposed study uses a stress process theoretical framework to explore the impact of stress exposure and stress proliferation during both caregiving and bereavement on long-term caregiver wellbeing. Reflecting the demographics of late-stage cancer, this study includes large proportions of under-served, low income and elderly populations, as well as African Americans, and combines quantitative and qualitative methods to enhance both validity and reliability. Study goals will be accomplished by building from a recently-concluded randomized controlled trial evaluating effects of a coping and communication support intervention for advanced cancer patients and their caregivers. Thus, a strength of the proposed study is that it will combine three unique data sources: 1) three waves of structured interview data collected during the parent study (at two points during caregiving and three months following patients'death), 2) detailed notes taken by the parent study's interventionists during their contacts with caregivers from enrollment to 12 months after the patient's death, and 3) in-depth mixed-method interviews with 50 caregivers 12-24 months following the patients'death. The first two data sources were collected as part of the parent study. The third will be completed and all data sources will be integrated as part of the proposed study.
Aims i nclude: 1) Exploring the context of caregiving and bereavement from diagnosis into the 2nd year after the patient's death, including caregiving strain, external stress exposure and stress proliferation, as well as sources of positive emotion and relief and relating these factors o the well-being of bereaved caregivers;and 2) Generating new hypotheses regarding the context of caregiving and bereavement as leading to adjustment, relief from burden, or complicated grief, and forming the basis for instrument development to identify circumstances which put bereaved caregivers at risk of poor psychosocial outcomes.
The Context of Care giving and Bereavement Adjustment in Late-Stage Cancer Current caregiving and bereavement literature focuses primarily on explaining distress and complicated grief purely in terms of vulnerability to the stresses of caregiving and largely ignoring other facets of the caregivers'lives. This study proposes to broaden the lens used to examine caregiver and bereavement stress by including stress exposure from events and strains outside of caregiving, tracing the connections between event-related distress and the social environment in which the bereaved caregiver lives. Such connections may lead to a more comprehensive understanding of caregiver bereavement outcomes, particularly the divergent trajectories of relief and complicated grief.