Family Caregiver Burden, Skills Preparedness, and Quality of Life in Non-Small Cell Lung Cancer

Abstract

PURPOSE/OBJECTIVES: Describe burden, skills preparedness, and QOL for caregivers of patients with NSCLC, and describe how findings informed the development of a caregiver palliative care intervention that aims to reduce caregiver burden, improve caregiving skills, and promote self-care. DESIGN: Descriptive, longitudinal. SETTING: One NCI-designated comprehensive cancer center in Southern California. SAMPLE: A total of 163 family members or friends who were 18 years or older and identified by patients as being the caregiver were accrued. METHODS: All eligible caregivers were approached by advance practice nurses (APNs) during a regularly scheduled patient clinic visit. Informed consent was obtained prior to study participation. Outcome measures were completed at baseline and repeated at 7, 12, 18, and 24 weeks. Descriptive statistics were computed for all variables, and one-way repeated measures Analysis of Variance (ANOVA) was used to test for change over time for all predictor and outcome variables. MAIN RESEARCH VARIABLES: Caregiver burden, skills preparedness, psychological distress, and QOL. FINDINGS: Caregivers were highly functional. Caregiver burden related to subjective demands increased significantly over time. Perceived skills preparedness was high at baseline, but decreased over time. Psychological distress was moderate but increased over time. Overall QOL was moderate at baseline, and decreased significantly over time. Psychological well-being had the worst QOL score. CONCLUSIONS: Caregivers experienced high levels of caregiver burden, and report deteriorations in psychological well-being and overall QOL over time. IMPLICATIONS FOR NURSING: Oncology nurses need to ensure that caregivers receive information that supports the caregiving role throughout the cancer trajectory.