“I Wish I Could Die So I Would Not Be in Pain”: A Qualitative Study of Palliative Care Needs Among People With Cancer or HIV/AIDS in Vietnam and Their Caregivers

TY - JOUR

T1 - “I Wish I Could Die So I Would Not Be in Pain”

T2 - A Qualitative Study of Palliative Care Needs Among People With Cancer or HIV/AIDS in Vietnam and Their Caregivers

AU - Pham, Van Anh

AU - Nguyen, Hannah

AU - Krakauer, Eric

AU - Harding, Richard

N1 - Funding Information: The authors have nothing to disclose. This work was supported by Atlantic Philanthropies to Massachusetts General Hospital. Publisher Copyright: © 2020 The Authors Copyright: Copyright 2021 Elsevier B.V., All rights reserved.

PY - 2021/8

Y1 - 2021/8

N2 - Context: Although cancer and HIV/AIDS are common causes of death in Vietnam, limited data exist on their palliative care needs. As palliative care becomes part of Universal Health Coverage, evidence is needed to scale up appropriate care. Objectives: To elicit from people with cancer or HIV/AIDS in Vietnam, and their caregivers, the specific multidimensional symptoms and concerns that cause serious health-related suffering. Methods: Semistructured, qualitative, in-depth interviews were conducted with stage III or IV cancer patients, people with HIV/AIDS, and their caregivers at three cancer treatment centers and two HIV/AIDS treatment centers in northern, central, and southern Vietnam. Interviews were analyzed using thematic analysis. Results: Sixty people were interviewed (21 cancer patients, 20 people with HIV/AIDS, 19 caregivers). Pain and other physical symptoms severely impacted their daily lives. Psychological distress—including sadness, depression, worry, and a feeling of having no future—was mentioned frequently, and it was exacerbated by disease progression and by social problems such as financial difficulties and, among people with HIV/AIDS, stigma. Caregivers also suffered physically and psychosocially. Spirituality emerged as a source of strength for patients. Findings highlighted patients' and family caregivers’ desire for more information about diagnosis, prognosis, and treatment, a shift toward individual decision-making. Conclusion: The findings demonstrate common, multidimensional, and severe suffering among people living with cancer or HIV/AIDS and their caregivers in Vietnam. These qualitative data should guide development of optimum clinical assessment tools and palliative care services for these populations.

AB - Context: Although cancer and HIV/AIDS are common causes of death in Vietnam, limited data exist on their palliative care needs. As palliative care becomes part of Universal Health Coverage, evidence is needed to scale up appropriate care. Objectives: To elicit from people with cancer or HIV/AIDS in Vietnam, and their caregivers, the specific multidimensional symptoms and concerns that cause serious health-related suffering. Methods: Semistructured, qualitative, in-depth interviews were conducted with stage III or IV cancer patients, people with HIV/AIDS, and their caregivers at three cancer treatment centers and two HIV/AIDS treatment centers in northern, central, and southern Vietnam. Interviews were analyzed using thematic analysis. Results: Sixty people were interviewed (21 cancer patients, 20 people with HIV/AIDS, 19 caregivers). Pain and other physical symptoms severely impacted their daily lives. Psychological distress—including sadness, depression, worry, and a feeling of having no future—was mentioned frequently, and it was exacerbated by disease progression and by social problems such as financial difficulties and, among people with HIV/AIDS, stigma. Caregivers also suffered physically and psychosocially. Spirituality emerged as a source of strength for patients. Findings highlighted patients' and family caregivers’ desire for more information about diagnosis, prognosis, and treatment, a shift toward individual decision-making. Conclusion: The findings demonstrate common, multidimensional, and severe suffering among people living with cancer or HIV/AIDS and their caregivers in Vietnam. These qualitative data should guide development of optimum clinical assessment tools and palliative care services for these populations.

KW - cancer

KW - HIV

KW - Palliative care

KW - qualitative research

KW - Vietnam

UR - http://www.scopus.com/inward/record.url?scp=85099551709&partnerID=8YFLogxK

U2 - 10.1016/j.jpainsymman.2020.11.030

DO - 10.1016/j.jpainsymman.2020.11.030

M3 - Article

C2 - 33285274

AN - SCOPUS:85099551709

SN - 0885-3924

VL - 62

SP - 364

EP - 372

JO - Journal of pain and symptom management

JF - Journal of pain and symptom management

IS - 2

ER -