Indian Journal of Palliative Care
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 ORIGINAL ARTICLE
Year : 2020  |  Volume : 26  |  Issue : 4  |  Page : 468--475

Families' experiences of end-of-life care at home for Iranian older adults: A qualitative study


1 Department of Nursing, University of Social Welfare and Rehabilitation Sciences, Tehran, Iran
2 Department of Nursing, Iranian Research Center on Aging, University of Social Welfare and Rehabilitation Sciences, Tehran, Iran
3 Nursing and Midwifery Care Research Center, School of Nursing and Midwifery, Tehran University of Medical Sciences, Tehran, Iran

Correspondence Address:
Kian Norouzi
Department of Nursing, Iranian Research Center on Aging, University of Social Welfare and Rehabilitation Sciences, Tehran
Iran
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/IJPC.IJPC_10_20

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Aim: While the care of dying elderly patients at home is very complex and ambiguous, it has not been studied in Iran so far. Hence, this study aimed to explore the experience of a representative sample of the Iranian family caregivers from the end-of-life (EOL) care for their elderly relatives. Methods: The present study was conducted using a qualitative content analysis method. Twelve family caregivers caring for the chronically ill dying elderly were selected using purposeful sampling. The purposive sampling method was applied with an extreme variation in sampling, and data gathering was pursued until data saturation was achieved. Semi-structured interviews were utilized for data collection. Interviews were recorded and instantly transcribed verbatim. Inductive content analysis was used to analyze the data. Results: Four core themes and 13 subthemes emerged from the experiences of family's caregiver as fallow: (1) Committed to care: This is related to encounter with the end of stage disease of the relative, accepting the care role and priority of care, (2) challenges of Care: Caregivers, despite their efforts, provided ineffective care, so they sought to empower themselves and at the same time provide compassionate care, (3) the crisis of care including the complexity of care, fear, and wandering, helplessness, devastating tension, and vacuum of supporting, and (4) conditions after death that family members involved with a sense of loss and Tension control. Conclusion: When families had to take care of their elderly patients at home, although their wish to give the best care, they are completely powerless to provide care, and in an atmosphere of the vacuum of supporting, they encounter severe challenges and crisis. It is vital that palliative care centers in the society are arranged to care for EOL elderly with comprehensive insurance services.






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