The Experience of Young Adult Caregivers of Patients with Left Ventricular Assist Devices (LVADs)

Advanced heart failure is a serious diagnosis that is associated with limited options at the end stage of the disease. Left Ventricular Assist Devices (LVADs) are mechanical circulatory support systems that can be used for patients with end stage heart failure. These devices are complex and require specialized training to manage. Visiting home care services are unable to provide support and the management responsibility falls solely on the patient and their designated caregiver. Young adults serve in this caregiving role and very little is known about their specific journey. The aim of the study was to understand the experience of young adult informal caregivers of patients with LVADs. Eight young adult caregivers were interviewed about their experiences with caring for their loved one with a LVAD. Using interpretative description the data was thoroughly analyzed. Three distinct time periods were identified. The early phase included when LVAD was first introduced and the post-operative hospitalization course. The second distinct time period described when the patient was first discharged home and the dyad’s adjustment to living and caring for the new device. The final time segment included the longer established care of the device and the new normal that emerged. Throughout these distinct time periods multiple themes arose. The beginning phase included the feeling that LVAD was the only option, fear of the unknown, gratitude for the device, and the important but straight forward training provided by the medical team. Through the second stage it was noted that there was an early overwhelming transition with eventual establishment of a routine, the necessity to plan around the needs of the patient, the need to set time for themselves and to provide emotional support to the patient and also have support for themselves. The final reflective period had themes of the care getting easier, pride in their role, improved quality of life and independence of their loved one, a strong relationship with their loved one and an improvement of who the young adult was as a person. These findings note that experience of young adults who care for LVAD recipients is unique as they themselves are in the process of navigating multiple life transitions. Providers of this distinct population need to make efforts to understand this cohort and create individualized treatment plans that could best support them. Additionally, education programs need to incorporate this knowledge and further research is warranted in learning more about this group and ensuring best practice is applied in the care plans of these young adult caregivers.