Life Beyond Heart Failure—What Are the Long-Term Challenges, Supportive Care Needs, and Views Toward Supportive Care of Multiethnic Asian Patients With Left Ventricular Assist Device and Their Caregivers?

Context Challenges experienced by patients with the left ventricular assist device (LVAD) and their caregivers during the early period after LVAD implantation are well documented. However, little is known about long-term challenges, supportive care needs, and views toward supportive care of Asian LVAD patients and caregivers. Objectives We aimed to explore the experiences of multiethnic Asian LVAD patients and caregivers so as to identify their long-term challenges, supportive care needs, and views toward supportive care. Methods Semistructured interviews with LVAD patients and caregivers were conducted based on the grounded theory approach. Participants were purposively recruited from the inpatient and outpatient settings of the National Heart Center Singapore. Results A total of 30 patients and 11 caregivers participated. More than half of the participants were Chinese (patients 63%; caregivers 64%). Most patients (83%) were males, whereas most caregivers were females (91%). The median duration on support was 31 months and 46 months for patients and caregivers, respectively. The implantation of the LVAD was a significant milestone in their lives and caused long-term changes in multiple domains (physical, financial, social, psychoemotional, and spiritual). Experiencing permanent and recurrent losses over time was particularly challenging. Participants expressed the need for mutual support between patient and caregiver and connectedness with others and society at large. Participants desired holistic supportive care from their health care team. Conclusion Asian LVAD patients and caregivers experienced long-term challenges and had unique supportive care needs. Our findings have implications on the design of future interventions and supportive care models.