Vanishing MCS Caregiver: Insights into the Impact of Machines on the Caring Relationship

Abstract

Purpose A comprehensive caregiver plan is crucial to the survival of patients with mechanical circulatory support (MCS). Currently, quantitative measures are used to assess caregiver plan readiness. However, these measures fail to capture the complexity of the caregiver experience or to anticipate caregiver burnout and attrition. We sought to explore the caregiver perspectives on adjusting to lifestyle changes in caring for an MCS patient. Methods A purposeful sample of caregivers (N =13: 77% female caregivers; 62% non-white; 77% working; age range 34-82) of Left Ventricular Assist Device (LVAD) patients ranging from 5 months to 6 years post implantation were recruited at a single center that offers a broad range of therapies for end stage heart disease. 8 semi-structured group interviews (the point at which concept saturation was achieved) were conducted with this group over a period of two months. Qualitative content analysis was used to analyze caregiver interview transcripts among two separate coders. Results After coder discussion and analytical agreement, the following themes were identified: Relationship Burden; Caregiver Struggle (Multidomain); Patient Dependence; Caregiver Coping for Survival; and Diet Related Tensions. Code co-occurrences in the text suggest strong relationships between Caregiver Struggle and Patient Dependence; Caregiver Struggle and Caregiver Coping for Survival; Caregiver Struggle and Relationship Burden; and Diet Related Tensions and Patient Dependence (see Figure 1). Conclusion The MCS trajectory begins with an acceptable caregiver plan. However, life and role changes post implant take a toll on caregivers. In isolation, they struggle to adapt by implementing a multitude of coping strategies which often leave them depleted. Implications for clinicians include increased emotional support for caregivers throughout the recovery trajectory to improve caregiver resilience.