Improving Cancer Family Caregivers' Knowledge of Care Options and Goals of Care Communication: Results From a Pilot RCT

Self-management refers to the daily activities patients and family caregivers perform to manage illness. Self-management barriers include lack of both understanding of care options (curative/palliative/hospice care) and goals of care (GoC) communication, which can lead to self-management that does not support patients' goals. We tested a psycho-educational intervention, Managing Cancer Care: A Caregiver's Guide (MCC-CG©), to improve family caregivers' knowledge of care options and goals of care communication as part of a self-management program. In this pilot RCT, we enrolled family caregivers of women with Stage I-IV breast cancer at Smilow Cancer Hospital in Connecticut. We gave MCC-CG© to the intervention group and symptom management education to the attention-control group. MCC-CG© consists of seven printed modules covering care options, caregivers' role in self-management, GoC communication, transitions, caregiving tasks and support, caregiver self-care, and symptom management. We collected data at baseline, one, and three months on knowledge of care options, engagement in self-management, GoC communication, uncertainty, and self-efficacy. Participants (n=35) had a mean age of 54 years (range 18-81). Over sixty-five percent (65.7%) were white, 34.3% were black/other minorities, and 42.9% were patients' spouses. Patients' cancer stage was 51.4% early (I or II) and 48.6% late (III or IV). Among the intervention group, data showed a medium effect size for improved knowledge of care options at one month with a sustained effect at three months, improved self-management at three months, and lower caregiver burden at one month. Intervention participants more frequently had GoC conversations with a nurse and reported less uncertainty and more hopefulness at three months. Participants rated MCC-CG© 9.2/10 (10=best). MCC-CG© has preliminary efficacy and was well received. Further study among a larger sample is needed to test MCC-CG© simultaneously with our patient intervention, Managing Cancer Care: A Personal Guide (MCC-PT©), to enhance self-management.