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The experience of family caregivers caring for a patient with chronic disorders of consciousness: a qualitative content analysis

Background: Management of a patient with chronic disorders of consciousness is a long-term and stressful situation for family caregivers. Aims: The aim of this study was to describe the experiences of family caregivers of patients with chronic disorders of consciousness. Methods: Purposeful sampling was used, data were collected through semi-structured, in-depth interviews at participants' homes. Data were analysed using qualitative content analysis. Findings: Results indicated that family caregivers of patients with chronic disorders of consciousness face many difficulties in providing care to vegetative state (VS) and minimally conscious state (MCS) patients; they experience it as a challenging type of care, which influences their mental health. Conclusion: Family caregivers are faced with many challenges because of the high burden of care, round-the-clock concern, taking care of an alive but unresponsive patient without receiving enough support. They experience mental and inner turmoil because of social isolation and dealing with contradictory feelings in their daily life.

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Key Information

Type of Reference
Jour
Type of Work
Journal article
Publisher
Mark Allen
ISBN/ISSN
1357-6321
Publication Year
2020
Issue Number
6
Journal Titles
International Journal of Palliative Nursing
Volume Number
26
Start Page
301
End Page
309