Open AccessLived Experiences and Long-Term Challenges and Needs of Asian Left Ventricular Assist Device Caregivers
Author(s) -
Shu Hui Neo,
Jasmine Si Min Ku,
Jasmine Yun Ting Tan,
Sungwon Yoon
Publication year - 2021
Publication title -
palliative medicine reports
Language(s) - English
Resource type - Journals
ISSN - 2689-2820
DOI - 10.1089/pmr.2021.0001
Subject(s) - coping (psychology) , family caregivers , grounded theory , psychological intervention , medicine , psychology , long term care , qualitative research , nursing , gerontology , clinical psychology , social science , sociology
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.