Caregivers’ Experience of End-of-Life Stage Elderly Patients: Longitudinal Qualitative Interview

Eliza Lai-Yi Wong, Janice Ying-Chui Lau, Patsy Yuen-Kwan Chau, Roger Yat-Nork Chung, Samuel Yeung-Shan Wong, Jean Woo and Eng-Kiong Yeoh
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Eliza Lai-Yi Wong: Centre for Health Systems and Policy Research, The Jockey Club School of Public Health and Primary Care, Faculty of Medicine, The Chinese University of Hong Kong, Hong Kong, China
Janice Ying-Chui Lau: Centre for Health Systems and Policy Research, The Jockey Club School of Public Health and Primary Care, Faculty of Medicine, The Chinese University of Hong Kong, Hong Kong, China
Patsy Yuen-Kwan Chau: Centre for Health Systems and Policy Research, The Jockey Club School of Public Health and Primary Care, Faculty of Medicine, The Chinese University of Hong Kong, Hong Kong, China
Roger Yat-Nork Chung: Centre for Health Systems and Policy Research, The Jockey Club School of Public Health and Primary Care, Faculty of Medicine, The Chinese University of Hong Kong, Hong Kong, China
Samuel Yeung-Shan Wong: Centre for Health Systems and Policy Research, The Jockey Club School of Public Health and Primary Care, Faculty of Medicine, The Chinese University of Hong Kong, Hong Kong, China
Jean Woo: The Jockey Club Institute of Ageing, The Chinese University of Hong Kong, Hong Kong, China
Eng-Kiong Yeoh: Centre for Health Systems and Policy Research, The Jockey Club School of Public Health and Primary Care, Faculty of Medicine, The Chinese University of Hong Kong, Hong Kong, China

IJERPH, 2022, vol. 19, issue 4, 1-12

Abstract: Objectives: This study seeks to provide an understanding of the changing experiences in caregivers of end-of-life patients in Hong Kong through exploring their caregiving journey. Methods: Using longitudinal individual qualitative interviews, a total of 14 caregivers of community-dwelling elderly patients receiving end-of-life care were recruited between 2015 and 2016. A series of in-depth interviews and observations were conducted in 14 cases during the end-of-life journey. Results: A thematic analysis revealed four sequential experiential stages, abbreviated as “CAPE” that caregivers confronted: Stage 1 Certainty, (1a) lack of certainty regarding the progression of decline at the end-stage of life (1b) feelings of despair as patients’ function decreased; Stage 2 Ambivalence, (2a) feelings of ambivalence after decisions were made regarding EOL care, (2b) struggle over care responsibility within families; Stage 3 Perturbed, (3a) varied in quality of EOL care, (3b) depressed mood arisen from frequent exposure to the suffering of elderly patients; and Stage 4 Expectation, (4a) losing the caregiving role as patients showing signs of imminent death. Conclusions: These findings increase our understanding of caregivers’ in-depth experience over time that arise within the structural context of end-of-life care. Our data highlights the need for end of life related knowledge and information, provision of a caring atmosphere and communication, and professional-led detachment in creating caregiving-friendly service in healthcare system, thus as to provide support and alleviate stress for caregivers with their critical responsibility and role during the course of end-of-life care.

Keywords: end of life care; EOL; end stage care; long term care; informal care; caregiver; stress; healthcare system; longitudinal qualitative (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2022
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