Living with Uncertainty: Caregiving at the End-of-Life

  • Penrod, Janice Lee, (PI)

Project: Research project

Description

DESCRIPTION (provided by applicant): While we have preliminary understanding of states of uncertainty in informal caregivers, nursing stands ill prepared to intervene during these complex life experiences. Uncertainty is best described as a state of "not knowing" or of doubt. This project extends previous work on states of uncertainty in informal caregivers into the context of end-of-life care in order to develop the tools necessary for a subsequent intervention study. The initial step in building an intervention protocol to support the integrity of caregivers experiencing uncertainty is to validate and extend theory on uncertainty. Aim 1 of this project addresses such theoretical development through a grounded theory study of variations in the experiences of uncertainty reported by informal caregivers who have experienced end-of-life care. The objectives of Aim 2 of the project are theoretical integration and the development of an assessment guide. An innovative qualitative method called template analysis will be used to overlay the findings of the grounded theory with multiple types and levels of related findings found in the literature in order to further refine our understanding of the concept of uncertainty among informal caregivers providing end-of-life care. Then, using a technique called concept integration, the refined concept of uncertainty will be linked with co-occurring concepts to provide a more advanced understanding of the experience. After these processes of theoretical integration, an assessment guide that explicates the behavioral cues marking the varied forms of uncertainty that are commonly experienced by informal caregivers will be developed. Finally, drawing upon the resources of the grounded theory, template analysis, practice theory, and human experience, strategies for managing varied forms of uncertainty will be integrated into the assessment guide. Such an integration of multiple forms of knowledge will produce a comprehensive compendium of strategies for intervening in times of uncertainty in order to maximize the informal caregiver's ability to contribute meaningfully as a critical partner in end-of-life care. By organizing significant theoretical components, related behavioral cues, and targeted interventions, the assessment guide of caregiver uncertainty will provide the researchers with the tools necessary for the development of an intervention protocol for use in subsequent research.
StatusFinished
Effective start/end date9/30/038/31/05

Funding

  • National Institutes of Health: $72,000.00
  • National Institutes of Health: $72,000.00

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caregiving
uncertainty
caregiver
grounded theory
experience
integration concept
theory-practice
applicant
qualitative method
integrity
nursing