Caregiving Affects the Quality of Life of Patients and their Caregivers after Mechanical Circulatory Support

  • Magasi S
  • Buono S
  • Yancy C
  • et al.
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Abstract

Purpose: Clinical guidelines for patients with mechanical circulatory support (MCS) require the identification of a caregiver (CG) to assist with MCS care. Little is known about the impact that caregiving has on health-related quality of life (HRQOL). The purpose of this study was to examine how living with MCS affects patients' and CGs' HRQOL over time. Methods: Our sample included 30 patients with ventricular assist devices (VADs) (implant strategy: 14=bridge to transplant, 16=destination therapy) and their CGs (20 spouses, 10 others). Semi-structured interviews about HRQOL post-VAD were conducted with both groups. Data were analyzed using constantcomparative methods. Results: Data from patients (mean age=58 years, 90% male) and their CGs (mean age=56 years, 80% female) indicate that living with MCS has a profound impact on both patients' and CGs' HRQOL (See Table 1). VAD placement, and the subsequent creation of the caregiving relationship, was described as a forced choice between implantation and death. The early post-VAD phase was a period of adjustment characterized by anxiety and hypervigilance related to VAD care, but also by a sense of gratitude. Over time, CG support remained important for MCS care and symptom monitoring and patient-CG dyads gained mastery of the VAD care process. Patients and CGs described role changes both positive, bringing them closer together, and negative, resulting in patient role loss and concerns about real or perceived CG burden. For patients, constant surveillance by CGs lead to a loss of autonomy. CGs reported career disruptions, restricted leisure activities, and increased sense of responsibility for MCS-related care, home maintenance, and in the case of younger pre-retirement patient-CG dyads for financial support. Shifting role responsibilities were more pronounced among spousal CGs. Male patients with spousal CGs described shame about having their wives assume responsibility for traditionally gendered tasks. Losses associated with MCS were accepted by CGs and patients with the knowledge that the alternative to MCS was significantly lower life expectancy. A network of support with multiple people assisting with VAD care helped mitigate negative consequences of caregiving. Conclusion: It is critical that both patients' and CGs' adjustment and HRQOL be monitored over time. Specifically, issues of relationship strain, emotional stress, and role loss for patients and CGs should be discussed and supportive resources provided, as needed.

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Magasi, S., Buono, S. K., Yancy, C. W., & Grady, K. L. (2015). Caregiving Affects the Quality of Life of Patients and their Caregivers after Mechanical Circulatory Support. Journal of Cardiac Failure, 21(8), S35–S36. https://doi.org/10.1016/j.cardfail.2015.06.132

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