Informal Family Care Partner Well-Being Is Diminished in End-Stage Liver Disease

Abstract

Abstract Background Chronic liver disease is a significant global neglected public health problem. End-stage liver disease is associated with substantial symptom complexity, disability, and care needs that require assistance from informal family care partners. Research on these care partners’ caregiver burden or strain, symptoms, and quality of life is sparse and has not focused on these variables as co-occurring or in the context of the quality of the relationship care partners have with the patients. Objectives The purpose of this study was to provide a collective presentation of patterns and determinants of well-being as measured by caregiver strain, depression, sleep, and quality of life in a cohort of informal family care partners for adult outpatients with end-stage liver disease. Methods Care partners (age > 18 years) were recruited from two liver clinics within two tertiary health care systems and invited to complete a cross-sectional survey. They completed the Multidimensional Caregiver Strain Index, Patient Health Questionnaire, Pittsburgh Sleep Quality Index, Short Form Health Survey, and Mutuality Scale. Descriptive statistics and latent class mixture modeling were used to analyze these data. Results The sample was predominantly female and White. The well-being of care partners was diminished. Three distinct classes of well-being were identified: mildly diminished (53.2%), moderately diminished (39.0%), and severely diminished (7.8%). Those at greater risk of worse well-being were younger, spouses, and had poorer relationship quality with the patients. Discussion To improve the well-being of care partners in moderately and severely diminished classes, assessing and addressing caregiver strain and co-occurring symptoms is essential. Addressing this strain and symptoms has the potential to maintain or optimize care partners’ ability to provide care to patients. Future researchers should include longitudinal and dyadic studies to examine how patients’ disease progression and symptoms may affect family care partners well-being and vice versa.