Stress and Coping Among Caregivers of Patients with A Left Ventricular Assist Device: A Multi-center Mixed Methods Study

Abstract

Introduction : Family caregivers of patients with a left ventricular assist device (LVAD) play a central and formalized role in post-implant care. Little research has focused on caregivers’ lived experience, including stress and coping. Therefore, we characterized longitudinal stress, correlates of stress, and coping processes among LVAD caregivers. Methods Using data from the 6-site DECIDE-LVAD trial, a sequential exploratory mixed methods study was performed. For the quantitative portion, the primary outcome was the Perceived Stress Scale (PSS-10, score 0-40) at 6 months. Caregivers were included in quantitative analysis if they completed the Perceived Stress Scale (PSS-10) and their patient-dyad had received an LVAD by 6 months. A sub-set of caregivers were purposively sampled for qualitative interviews. Predictive modeling employed multiple linear regression. Based on the quantitative findings and guided by the Transactional Model of Stress and Coping, semi-structured interviews explored causes of stress and coping processes. Integration was performed during the qualitative and interpretation phases. Results A total of 96 caregivers met inclusion criteria for quantitative analysis. Caregivers were mostly female, white, spouses of the patient, and cohabitated with the patient. Mean (SD) PSS pre-implant was 14.3 (5.5), and at 6 months was 11.8 (6.9). Pre-implant, only decreased preparedness for caregiving was associated with higher PSS at 6 months. At 6 months, increased caregiver depressive symptoms, decreased caregiver preparedness for caregiving, and lower patient quality of life were associated with higher PSS. Qualitative analysis of 25 caregivers revealed the causes of stress coalesced around three themes: 1) lack of preparedness to be a caregiver, 2) uniqueness of stress for the caregiver and patient situation, and 3) caregiving responsibilities physically and emotionally impacting caregivers. In order to cope with stress, most caregivers employed emotion-focused coping. Conclusions Family caregivers are more likely to experience stress if they are unprepared, have depressive symptoms, and are caring for a patient with a decreased quality of life. Emotion-focused coping strategies were common for caregivers. Future work should better prepare caregivers for this role and support them through the caregiving experience.