Abstract
Introduction: The care of patients in vegetative state at home is difficult because they need continuous medical interventions and extensive care. The present study aims to explain the process of home care of patients in vegetative state at home. Methods: This study was a qualitative research with a grounded theory approach. The participants were 22 people (included 17 family caregivers and 5 professional caregivers) who were enrolled in a purposive sampling. Data was gathered through unstructured interviews, observations and field notes. Data collection was continued to saturation. Data analysis was performed through the Strauss and Corbin 1998 approach. The MAXQDA10 software was used to facilitate data analysis. Results: The data analysis led to emerge four main concepts included "erosive care", "erosive expenditures", "seeking solver education" and "lasting hope" as the axes of the study. Participants' experiences showed that the main concern of family caregivers of vegetative patients was "playing an inevitable role in care", in which they did not hesitate to make any effort, and they tolerated all the problems and issues. Therefore, "resilient care" was extracted as the underlying idea of this study. Conclusion: The process of resilient care of vegetative patients at home showed planning by policy makers in health system is very important and underscored the necessity for supporting families and family caregivers of these patients. So some changes in the health system for this goal might include considering home care and supporting them in various aspects, especially information, financial and emotional dimensions.
Highlights
The care of patients in vegetative state at home is difficult because they need continuous medical interventions and extensive care
From the analysis of the collected data, the central category of “resilient care” and the four main categories including “erosive care”, “erosive expenditure”, “seeking solve reeducation” and “lasting hope “were achieved which described the experiences of family caregivers of vegetative patients at home
Comprehensive care responsibilities: Participants' statements indicated that in the lack of social and the health system support, and the complete dependence of the vegetative patient on others, the family is responsible for the comprehensive care of the vegetative patient
Summary
The care of patients in vegetative state at home is difficult because they need continuous medical interventions and extensive care. Results: The data analysis led to emerge four main concepts included “erosive care”, “erosive expenditures”, “seeking solver education” and “lasting hope” as the axes of the study. Conclusion: The process of resilient care of vegetative patients at home showed planning by policy makers in health system is very important and underscored the necessity for supporting families and family caregivers of these patients. The difficulty in the care of vegetative patients lies in their particular conditions, because they require continuous medical interventions and extensive care[2,5,6] such as maintaining airway, maintaining fluid balance, meeting nutrition needs, providing oral care, preserving skin health and integrity, maintaining corneal integrity, maintaining body temperature, urinating, improving bowel function and providing sensory stimuli.[2]
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