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

Abstract

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.

Depression, anxiety, stress levels, and coping styles of caregivers of patients with left ventricular assist device

“…In addition to the responsibility they take, especially the failure of the device or serious complications that may develop and repeated hospitalizations are a significant source of stress for caregivers. Also, caregivers' lack of knowledge about care, fear of harming the patient they care for, hindering other roles, inability to spare time for themselves, economic limitations, social isolation, changing sexual life, and constant uncertainty and fear of death cause intense anxiety, stress, and depression (Magid et al, 2016; Neo et al, 2021). Studies reveal that caregivers experience higher depression, anxiety, and stress than LVAD patients (Brouwers et al, 2015; Waldenburger et al, 2020).…”

“…hindering other roles, inability to spare time for themselves, economic limitations, social isolation, changing sexual life, and constant uncertainty and fear of death cause intense anxiety, stress, and depression(Magid et al, 2016;Neo et al, 2021). Studies reveal that T A B L E 2 Comparison of sociodemographic characteristics and depression anxiety and stress scores of caregivers F = 6.251, p = 0.003 KW = 10.705, p = 0.005 F = 2.207, p = 0.118 Note: Bold values are statistically significant at p values.…”

Facilitators and barriers to implementation of a patient and staff reported measure for screening of palliative concerns of patients with heart failure: a qualitative analysis using the Consolidated Framework for Implementation Research

“…36 , 37 Cultural views towards palliative care and perceived potential stigma of discussing psycho-emotional issues were also similarly described in our prior work. 38 , 39 Therefore, more efforts would be needed to improve patient engagement regarding the value of patient-reported surveys and how support could be given to individuals who have challenges with palliative specific surveys, before large-scale roll out of IPOS for patients with heart failure in the cardiology setting.…”

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

“…7 BTT and DT patients and caregivers often live long-term with the LVAD due to low organ transplant rates; enduring multi-dimensional challenges in the physical, financial, psycho-emotional, and spiritual domains. 8,9…”

“…7 BTT and DT patients and caregivers often live long-term with the LVAD due to low organ transplant rates; enduring multidimensional challenges in the physical, financial, psychoemotional, and spiritual domains. 8,9 Therefore, for advanced HF patients and their caregivers who are considering an LVAD, engaging in shared decisionmaking with their healthcare team will ensure that decisions are informed and their right to health and well being is protected. 10 In doing so, the healthcare team can provide care that is aligned with patients' preferences and expectations.…”