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Exploring Caregiver Activation in Serious Illness Communication With Healthcare Providers
Elaine Wittenberg1, Joy V Goldsmith2, Sierra Forrest3
1From California State University Los Angeles, Department of Communication Studies, Los Angeles, CA, USA.
The American Journal of Hospice & Palliative Care
|June 17, 2025
Summary
Family caregivers show more trust and activation when they perceive the patient is dying or the nurse is credible. Trust in nurses is key for effective caregiver activation in serious illness communication.
Area of Science:
- Gerontology
- Oncology
- Palliative Care
Background:
- Caregiver activation, defined as the ability to navigate patient care needs, is poorly understood.
- Serious illness communication between healthcare providers and family caregivers is critical.
- Trust influences caregiver activation and engagement in patient care.
Purpose of the Study:
- To explore how family caregivers describe activation and trust in serious illness communication.
- To identify factors influencing caregiver activation and trust in healthcare providers.
Main Methods:
- Qualitative analysis of 36 interviews with caregivers of patients with cancer or dementia.
- Thematic analysis to identify patterns in caregiver descriptions of activation and trust.
Main Results:
- Caregiver activation with trust occurred when patients were perceived as actively dying or nurses were highly credible.
- Activation with less trust was associated with perceived biomedical urgency, lower nurse credibility than physicians, or family discord.
- Perceived physician credibility was linked to less caregiver activation with trust.
Conclusions:
- A distinction exists between trust-based and mistrust-based caregiver activation.
- Nurses play a significant role in fostering caregiver activation.
- Future nurse communication training should emphasize trust-building strategies to enhance their role in palliative care.
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