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

Author

Listed:
  • 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)

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.

Suggested Citation

  • Eliza Lai-Yi Wong & Janice Ying-Chui Lau & Patsy Yuen-Kwan Chau & Roger Yat-Nork Chung & Samuel Yeung-Shan Wong & Jean Woo & Eng-Kiong Yeoh, 2022. "Caregivers’ Experience of End-of-Life Stage Elderly Patients: Longitudinal Qualitative Interview," IJERPH, MDPI, vol. 19(4), pages 1-12, February.
    • Handle: RePEc:gam:jijerp:v:19:y:2022:i:4:p:2101-:d:748366
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    References listed on IDEAS

    as
    1. Suet Ying Ng & Eliza Lai-Yi Wong, 2021. "The Role Complexities in Advance Care Planning for End-of-Life Care—Nursing Students’ Perception of the Nursing Profession," IJERPH, MDPI, vol. 18(12), pages 1-13, June.
    2. Sheung-Tak Cheng & Alfred C. M. Chan, 2006. "Filial Piety and Psychological Well-Being in Well Older Chinese," The Journals of Gerontology: Series B, The Gerontological Society of America, vol. 61(5), pages 262-269.
    3. Grov, Ellen Karine & Fosså, Sophie D. & Sørebø, Øystein & Dahl, Alv A., 2006. "Primary caregivers of cancer patients in the palliative phase: A path analysis of variables influencing their burden," Social Science & Medicine, Elsevier, vol. 63(9), pages 2429-2439, November.
    4. Shih-Ya Leung & Eliza Lai-Yi Wong, 2021. "Assessing Medical Students’ Confidence towards Provision of Palliative Care: A Cross-Sectional Study," IJERPH, MDPI, vol. 18(15), pages 1-11, July.
    5. Eliza Lai-Yi Wong & Nicole Kiang & Roger Yat-Nork Chung & Janice Lau & Patsy Yuen-Kwan Chau & Samuel Yeung-Shan Wong & Jean Woo & Emily Ying-Yang Chan & Eng-Kiong Yeoh, 2020. "Quality of Palliative and End-Of-Life Care in Hong Kong: Perspectives of Healthcare Providers," IJERPH, MDPI, vol. 17(14), pages 1-14, July.
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