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Informal Family Caregiving at the End of Life: A Discursive Analysis

Background: Shifts in locations and levels of care and changing demographics have created a high demand for informal family caregivers. The U.S. healthcare system could not sustain the financial or human resources necessary to meet the needs of care recipients who are dying without the assistance of informal family caregivers. End-of-life caregivers pay a price— emotional, social, financial, and physical—throughout the caregiving process. Many factors contribute to the cost of caregiving, such as caregiver distress and burden. Despite the extensive scientific literature on caregiving at the end of life, necessary evidence to inform nursing science in ways that adequately and appropriately support and sustain those healthy informal family caregivers providing end-of-life care remains unknown. No research to date has approached this problem from a linguistic standpoint. Methods: This study used discourse-based analysis to examine a qualitative secondary dataset to understand which aspects of self (caregiver) and other (care recipient) are revealed through caregiver discourse and how a caregiver’s perception of self and the care recipient change over time. Principles of discourse analysis were applied to develop an analytic framework and explore the linguistic cues (i.e., grammar, reference, identity, deixis, stance, indexicality and agency) expressed by a caregiver in their role as caregiver. Findings: Findings demonstrated the usefulness of a discourse-based analytic method as a new approach in the reuse of large qualitative secondary datasets. In addition, linguistic cues were revealed about how a caregiver perceives self and the care recipient over time. Results established an analytic framework that can be applied to a larger sample of this dataset to more deeply and precisely reveal discursive cues within one End-of-Life Caregiving Trajectory (expected-death) and across all three trajectories (expected-death, unexpected-death and mixed-death). Understanding a caregiver’s discursive cues may give clinicians the ability to better identify subtle yet important expressions of caregivers’ perception of self and others in the caregiving role. Conclusions: Further analysis is needed to identify how these linguistic patterns can lead to interventions that support informal family caregivers. Timely and appropriate interventions in times of uncertainty can mitigate negative outcomes for the caregiver and care recipient, resulting in a healthy caregiving workforce.

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The Pennsylvania State University