Improving well-being in caregivers of terminally ill patients. Making the case for patient suffering as a focus for intervention research

Abstract

Family caregivers are integral to the care of patients with physical or mental impairments. Unfortunately, providing this care is often detrimental to the caregivers' health. As a result, in the last decade, there has been a proliferation of interventions designed to improve caregivers' well-being. Interventions for caregivers of persons at end of life, however, are relatively few in number and are often underdeveloped. They also are typically designed to help reduce the work of caregiving or to help caregivers cope with the physical and emotional demands of providing care. Although useful, these interventions generally ignore a primary stressor for family caregivers -- a loved one's suffering. Patient suffering, whether physical, psychosocial, or spiritual, has a major impact on family caregivers. However, interventions that focus on the relief of patient suffering as a way to improve caregiver well-being have rarely been tested. It is our view that more research in this area could lead to new and more effective interventions for family caregivers of seriously or terminally ill patients. In support of our view, we will define suffering and review the relationships between patient suffering and caregiver well-being. We will then discuss a conceptual framework for intervention design. Finally, we conclude with a discussion of implications and future directions for intervention research.