Longitudinal changes in physical and psychological outcomes in spousal vs. non-spousal caregivers for patients with end-stage liver disease.

Purpose: Although caregivers for patients with end-stage liver disease (ESLD) experience adverse physical and psychological outcomes, little is known about how these experiences change over time. The aim of this study was to identify trajectories in physical and psychological outcomes in caregivers for adults with ESLD over the course of 12 months.

Methods: Informal caregivers (age ≥ 18 years) were recruited from liver clinics within two medical centers. Survey data were collected at baseline and every 3 months for 12 months. Caregivers completed the Multidimensional Caregiver Strain Index, Pittsburgh Sleep Quality Index, Patient Health Questionnaire, Mishel Uncertainty in Illness Scale for Family Members, Short Form Health Survey, and Multidimensional Perceived Social Support Scale.

Results: The sample (N = 186, age 56.7 ± 13.2 years) were predominantly female (75.3%) and White (89.2%). Caregiver sleep quality and depressive symptoms did not change, whereas care-related strain (p = 0.001) and uncertainty (p = 0.001) improved significantly over time. Spousal caregivers had significantly worse mental quality of life (QOL) at baseline (p = 0.006) compared to non-spousal caregivers. Spousal caregiver mental QOL improved over time, whereas there was no change in mental QOL of non-spousal caregivers (p = 0.025). Relationship quality and female gender were associated with worsening physical QOL over time (p = 0.011 and p = 0.012, respectively).

Conclusion: To maintain or improve caregivers' abilities to provide care, healthcare professionals should provide resources to caregivers. Future research should include longitudinal, dyadic studies and focus on interventions for improving caregiver physical and mental QOL.