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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.
This chapter describes different ways to identify outcome measures once the outcomes that matter most are identified. These outcome measures can be used to see if outcomes are improving or not. The chapter also gives an example of how to organize chosen outcome measures using the Capability, Comfort, and Calm framework. Guiding principles for narrowing an outcome measure set to a small set of actionable measures are outlined.
This chapter describes what it means to measure the outcomes that matter most to people and describes the Capability, Comfort, and Calm outcome measurement framework developed by Elizabeth Teisberg and Scott Wallace.This framework orients measurement and improvement efforts around achieving health and the outcomes that matter most to patients. It also helps reframe existing measurement efforts into a framework that facilitates measuring the results of health care. This chapter outlines the following key principles in measuring health outcomes: measure at the individual patient level and measure during the course of care.
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