Long-term mental health burden of family caregiving to heart transplant recipients

Abstract

Objective: For most heart transplant (tx) recipients, family members adopt key caregiving roles in the maintenance of the recipient’s long-term post-tx health. There is little evidence beyond the initial recovery period regarding mental health risks and benefits associated with caregiving in this context. We examined prevalence and risk factors for depressive and anxiety-related disorders in caregivers through 3 years after the recipient’s tx. Procedures: In a cohort of 205 heart recipients, 190 identified a primary family caregiver. Caregivers received psychiatric and psychosocial evaluations at 2-, 7-, and 12-mos. post-tx, with long-term reevaluation at 36-mos. post-tx. Data on recipients’ physical health and post-tx course were obtained from medical records and nurse evaluations. Survival analysis determined the cumulative rates psychiatric disorders and the role of psychosocial risk factors in the caregiver sample. Results: Caregivers’ rates of depressive and anxiety-related disorders were considerably elevated over rates among (a) tx recipients themselves, and (b) community and chronic disease populations. By 3 years post-tx, the cumulative risks were: Major Depressive Disorder, 32.9%, Adjustment Disorders, 36.0% (30.1% with anxious mood); Post-Traumatic Stress Disorder related to the tx, 24.5%, Generalized Anxiety Disorder, 8.0%, and any assessed disorder, 57.4%. In contrast to earlier analyses showing that psychiatric disorder was most likely during the first year post-tx for recipients, caregivers showing a continued increase in prevalence over the entire 3-year period. Among the factors increasing caregivers’ risk (p .05) for psychiatric disorder were: being the recipient’s spouse (rather than another relative), performing more daily caregiving tasks, greater time restriction due to caregiving, a poor relationship with the recipient, and low social supports from family and friends. Conclusions: There is a need for appropriate educational and clinical interventions to tx families, many of whom enter the tx experience with little knowledge as to what to expect in terms of daily life in the long-term post-tx.