Life Patterns of Family Caregivers of Patients With Amyotrophic Lateral Sclerosis.

Amyotrophic lateral sclerosis (ALS) is a terminal disease that greatly affects patients and the family caregivers who provide most of their care. Despite the psychological, physical, and financial strain placed on ALS caregivers, few research efforts have been directed to this caregiving phenomenon. The purpose of this research study, utilizing Newman's health as expanding consciousness as the theoretical framework and research method, was to advance understanding of the experience of ALS family caregivers for the advancement of nursing science. Nine patterns of the whole across all family caregivers emerged from the data, showing important implications for nursing research and practice.

The influence of the culture of care on informal caregivers' experiences.

The environment of care can have a profound impact on caregiving experiences of families caring for loved ones with a life-limiting illness. Care is often delivered through disease-specific specialty clinics that are shaped by the illness trajectory. In this study, the following 3 distinct cultures of care were identified: interdisciplinary, provider dominant, and cooperative network. Each of these cultures was found to express unique values and beliefs through 5 key characteristics: acknowledgment of the certainty of death, role of the formal caregiver, perception of the patient system, focus of the patient visit across the trajectory, and continuum of care across the trajectory.

A model of caregiving through the end of life: seeking normal.

Informal family caregivers provide significant contributions to end-of-life (EOL) care. A theoretical model of the phases and transitions of EOL caregiving was explicated using grounded theory methods to explore the experiences of 46 family caregivers of adults suffering a variety of life-limiting conditions. The derived model describes four phases of caregiving spanning prediagnosis through bereavement. Phases are demarcated by key transitions experienced when the illness progression manifestly challenges the established "steady state" achieved by the caregiver. The basic social process was defined as "seeking normal" as caregivers sought reliable patterns of everyday life while meeting the demands of caregiving. Understanding the progression of EOL caregiving enables clinicians to better support family caregivers as both coproviders and corecipients of care.