Title of article :
Barriers to End‑of‑Life Care Delivery to Home‑Dwelling Terminally‑Ill Older Patients: A Qualitative Content Analysis
Author/Authors :
Dehi, Manijeh Department of Nursing - University of Social Welfare and Rehabilitation Sciences , Norouzi, Kian Department of Nursing - Iranian Research Center on Aging - University of Social Welfare and Rehabilitation Sciences , Mohammadi, Farahnaz Department of Nursing - Iranian Research Center on Aging - University of Social Welfare and Rehabilitation Sciences , Negarandeh, Reza Nursing and Midwifery Care Research Center - School of Nursing and Midwifery - Tehran University of Medical Sciences, Tehran, Iran
Abstract :
Background: In the last days of life, home‑dwelling terminally‑ill older patients have complex care needs. End‑of‑life (EOL) care for these patients
is usually delivered at home. However, there is limited information about the
barriers to EOL care delivery to home‑dwelling terminally‑ill older patients.
Objectives: This study is aimed to explore the barriers to EOL care delivery to
home‑dwelling terminally‑ill older patients. Methods: This qualitative study was
conducted in 2017–2018. Ten family caregivers and ten health‑care providers were
purposively selected. The main inclusion criterion was the experience of EOL
care delivery to home‑dwelling terminally‑ill older patients. Data were collected
through semi‑structured interviews and were analyzed through conventional
content analysis. In total, 23 interviews were held with twenty participants.
Results: The barriers to EOL care delivery to home‑dwelling terminally‑ill
older patients were categorized into the following three main categories and ten
subcategories: inappropriate community‑based healthcare context (subcategories:
lack of public home care services, lack of palliative/hospice care services,
legal/ethical dilemmas, and wrong cultural beliefs leading to wrong EOL
care), unsupportive healthcare providers (subcategories: limited preparation
for EOL care delivery, negligence towards appropriate home care delivery, and
indifference to patients’ and their families’ rights), and inappropriate family
conditions (subcategories: families’ lack of care‑related knowledge and skills,
families’ poor financial status, and tension in families). Conclusion: There are
different familial, financial, professional, organizational, and social barriers to EOL
care delivery to home‑dwelling terminally‑ill older patients. Culturally‑appropriate
policies and strategies are needed for operationalizing EOL care, integrating it
into the public health‑care system, and preparing healthcare providers and family caregivers for its delivery.
Keywords :
Aged , Death , Palliative care , Qualitative research , Terminal care
Journal title :
Nursing and Midwifery Studies