Addressing death anxiety in caregivers of patients with malignant glioma: A Phase 1a Define trial investigating the suitability of CALM therapy.

OBJECTIVES

Managing Cancer and Living Meaningfully (CALM) therapy may be a beneficial intervention for addressing death anxiety in caregivers yet has not been formally evaluated in this population. The purpose of this Phase 1a Define trial was to evaluate the suitability of CALM for caregivers of patients diagnosed with malignant glioma using qualitative stakeholder interviews prior to pilot testing.

METHODS

Twenty-two bereaved caregivers participated in a focus group and completed subsequent caregiver-reported outcome measures. During the focus group, caregivers received information about CALM and provided feedback on the intervention's relevance and recommendations to improve its content and delivery for the caregiving experience. A team of coders qualitatively analyzed responses using thematic, deductive, latent analysis (kappa = 0.86).

RESULTS

Results suggest that CALM is highly relevant to the caregiving experience and may benefit caregivers emotionally, increase preparedness and self-efficacy in their role, improve their communication with the patient, and provide a unique opportunity to receive specialized care. Potential hurdles for participation included limited time and energy, concerns about burdening the patient by sharing their emotions, and worries that their loved one would not be emotionally or cognitively capable of participating. Participants also recommended additional content areas relevant to caregiving (i.e., burden and bereavement) and provided suggestions to improve CALM's delivery (timing, initial presentation, session format, and logistics).

SIGNIFICANCE OF

RESULTS

Participants' feedback was largely positive and supports piloting an optimized CALM protocol among malignant glioma caregivers. Further research is needed to determine CALM's effectiveness in caregivers of patients with malignant gliomas.