Exploring Caregiver Activation in Serious Illness Communication With Healthcare Providers

Abstract

Objective: Little is known about the family caregiver’s willingness and ability to navigate the patient’s care needs, known as caregiver activation. The purpose of this study was to explore how caregivers describe activation and trust in serious illness communication with healthcare providers. Methods: Thirty-six interviews with caregivers who self-identified as a caregiver to a person with cancer or dementia (including Alzheimer’s disease) were qualitatively analyzed. Results: A thematic analysis revealed activation with trust when caregivers perceived the patient was actively dying or perceived the nurse as most credible. When the caregiver perceived biomedical urgency, the nurse was perceived as less credible than physician, or there was family discord, activation was described with less trust. Perceived physician credibility was the only theme representing less caregiver activation with trust. Conclusions: Findings revealed a difference between trust- and mistrust-based activation, with notable findings related to the role of nurses. To foster caregiver activation, future nurse communication training should include trust-building strategies to support their role as primary palliative care providers.

Publication Title

American Journal of Hospice and Palliative Medicine

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