Deciding to Live (or Not) With a Left Ventricular Assist Device-a Thematic Analysis Exploring Factors Influencing the Decision-Making Process in Advanced Heart Failure Patients in Singapore.

Background: It is often difficult for patients with advanced heart failure (HF) to decide whether to live with a left ventricular assist device (LVAD) or not. Little is known about their decisional needs prior to LVAD implantation and if these needs were met in the Asian cultural setting. Aims: We aimed to explore the influences, concerns, and needs surrounding the decision-making process of the LVAD implantation among multi-ethnic Asian patients with HF. Methods: Semi-structured interviews with HF patients and caregivers were conducted, based upon the grounded theory approach. Participants were purposively recruited from the inpatient and outpatient setting of the National Heart Centre Singapore. Results: A total of 31 patients and 11 caregivers participated. Mindsets that shaped decision-making ranged from "having no choice," "being reflective," "taking a gamble," and "fighting on." Instead of making a sole decision, many patients reported that decisions were shared with the family or medical team. Current LVAD patients who acted as patient ambassadors were also strong influences. Spiritual support was pivotal to decision-making for some participants. Goals influencing decision-making including protecting the family and life prolongation improving quality of life. Values held close included sanctity of life, trusting in a higher power, believing in pre-destination or karma, and preserving family harmony. Participants had concerns about cost, employment, and health outcomes. Conclusions: Asian LVAD patients and caregivers had culturally specific mindsets, goals, and values and concerns around decision-making. Our findings have implications for the design of interventions and supportive care models.

Lived Experiences and Long-Term Challenges and Needs of Asian Left Ventricular Assist Device Caregivers.

Background: Caregivers are essential for improved outcomes in patients living with left ventricular assist device (LVAD). There is a paucity of research on a long-term LVAD caregivers' experiences and burdens. Objectives: The aim of this study was to explore long-term challenges and needs of LVAD caregivers in the Asian health care setting. Design: We conducted semistructured interviews with caregivers of patients who were currently or previously living with the LVAD. Settings/Subjects: Caregivers were recruited from the National Heart Centre Singapore. Measurements: Interviews were conducted in English and Chinese. All interviews were transcribed verbatim and analyzed based on grounded theory. Chinese interviews were translated to English before transcription. Results: A multiethnic and multireligious sample of 11 caregivers participated. Median caregiving duration was 45 months. Caregivers described long-term challenges that were multifaceted. Misaligned patient expectations, stigmatization and limited social resources within the family and society affected caregivers' coping. Existing gender roles and spiritual and cultural influences shaped how caregivers appraised, made meaning of caregiving, and assessed support. Long-term caregivers' needs included learning from role models, shifting perspectives, enhancing communication between patient and caregivers, advocacy efforts, and holistic medical care. Conclusions: Gender roles as well as cultural and spiritual influences affected coping and access to support in long-term Asian LVAD caregivers. Future interventions should consider culturally relevant approaches to improve well-being and quality of life of caregivers.

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.