Fateme Goudarzi
1,2* , Heidarali Abedi
3 , Kourosh Zarea
2 , Fazlollah Ahmadi
4 , Seyedeh Zahra Hosseinigolafshani
5 1 Social Determinants of Health Research Center, Lorestan University of Medical Sciences, Khorramabad, Iran
2 Department of Nursing, Nursing and Midwifery Faculty, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran
3 Department of Nursing, Nursing and Midwifery Faculty, Isfahan (Khorasgan) Branch, Islamic Azad University, Isfahan, Iran
4 Nursing Care Research Center in Chronic Diseases, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran
5 Department of Nursing, Faculty of Medical Sciences, Tarbiat Modares University, Tehran, Iran
6 Department of Nursing, Nursing and Midwifery Faculty, Qazvin University of Medical Sciences, Qazvin, Iran
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.