COMPREHENSIVE PALLIATIVE CARE: SPOUSAL CAREGIVERS OF HEART FAILURE PATIENTS

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DESCRIPTION (provided by applicant): Nearly 5 million Americans live with heart failure with 550,000 newly diagnosed each year (AHA, 2005). Within the first year of diagnosis 30%-50% will die, and among men aged 65 or younger, 80% will be dead within 8 years of diagnosis. Yet, less than 10% are offered supportive services beyond basic medical care. Our long-term goal is to test the utility of a model of palliative care, focusing on female spousal caregivers, to support these pivotal partners in providing high quality care to those living with and dying from heart failure by developing an individualized, need-driven, phase-specific intervention protocol that will be tested in future studies. The specific aims are: 1) to delineate palliative care needs of female spousal caregivers during the phases of chronic, progressive decline preceding the end of life in heart failure; 2) to identify the critical transition point at which female spousal caregivers recognize the severity of the diagnosis of heart failure and thus acknowledge the need for and acceptance of palliative care services beyond symptom management, and 3) to refine/extend the model of palliative care for female spousal caregivers to include known and newly identified interventions in a phase-specific, needs-directed intervention protocol. In order to meet these aims, we will use methods of grounded theory first, to verify the fit of our theoretical models with the experiences of these female spousal caregivers; then, to extend the model by delineating unmet care needs that could be addressed through palliative care services. Approximately 35 female caregivers will be interviewed. Initially, 10 retrospective interviews will be done with women following the death of their spouses; then 25 active caregivers will be recruited and interviewed monthly for one year to capture the dynamic nature of both caregiving and heart failure. The refined model will be extended to a more comprehensive level by integrating additional data from extant literature and small group interviews with experts in medical management of heart failure, palliative care, and end of life. From this comprehensive model, an intervention protocol that prescribes a compendium of need-driven, phase-specific interventions, based on behavioral and verbal cues will be developed. This project will contribute to the public health of the nation by identifying strategies for providing comprehensive palliative care services to informal spousal caregivers who provide significant support to the millions of Americans living and dying with heart failure.