Document Type : Original Article
Authors
- . Aliakbar Keykha 1
- . Monir Ramezani 2
- . Shahram Amini 3
- . Hossein Karimi Moonaghi 4
- . Azadeh Saki 5
1 Department of Medical‑Surgical Nursing, School of Nursing and Midwifery, Mashhad University of Medical Sciences, Mashhad, Iran
2 Nursing and Midwifery Care Research Center, Mashhad University of Medical Sciences, Mashhad, Iran, Department of Pediatric Nursing, School of Nursing and Midwifery, Mashhad University of Medical Sciences, Mashhad, Iran
3 Lung Research Center, Mashhad University of Medical Sciences, Mashhad, Iran Department of Anesthesiology and Critical Care, School of Medicine, Mashhad University of Medical Sciences, Mashhad, Iran
4 Department of Medical‑Surgical Nursing, School of Nursing and Midwifery, Mashhad University of Medical Sciences, Mashhad, Iran Nursing and Midwifery Care Research Center, Mashhad University of Medical Sciences, Mashhad, Iran Department of Medical Education, School of Medicine, Mashhad University of Medical Sciences, Mashhad, Iran
5 Department of Biostatistics, School of Health, Mashhad University of Medical Sciences, Mashhad, Iran
Abstract
BACKGROUND: Patients with a vegetative state (VS) are completely dependent on caregivers in
all physical aspects of their lives. Caring for such patients comes with a great deal of difficulty for
family caregivers. As a result, family caregivers must be fully trained and prepared for this role. The
present qualitative study was conducted to investigate the educational challenges faced by family
caregivers of VS patients for home care preparedness.
MATERIALS AND METHODS: The present qualitative study was conducted through the conventional
content analysis method from August 2020 to September 2021 in two provinces of Iran (Sistan and
Baluchestan Province; and Razavi Khorasan Province). Fourteen family caregivers of patients in a VS
were included in the study. Semi‑structured and in‑depth interviews were employed to collect data.
The Graneheim and Lundman method was utilized to conduct the data analysis using MAXQDA2020
software. Data collection continued until data saturation and the identification of main categories.
RESULTS: As indicated by the data analysis, three categories of “unmet educational needs,”
“confused caregiver,” and “searching for practical knowledge” which included 19 sub‑categories
described the experiences of family caregivers of patients in a VS concerning challenges they went
through in preparation for patient care at home. Participants’ experiences revealed that despite the
inadequacy of educations provided by health‑care providers on knowledge and skills required by
family caregivers, they were committed to caring for the patient and trying to acquire the required
knowledge.
CONCLUSION: Results indicated that inadequate education and the lack of family caregivers’
contribution to caring for the patient in the VS during their stay in the hospital impedes their acquisition
of adequate knowledge and skill to care for patients at home. Therefore, healthcare system
policymakers should be planning to eliminate the educational barriers faced by family caregivers
and expand the educational activities of hospitals’ homecare centers to provide educational support
of family caregivers after the patient’s discharge.
Keywords
The vegetative state: Prevalence, misdiagnosis, and treatment
limitations. J Am Med Dir Assoc 2015;16:85.e9‑14.
2. Monti MM, Laureys S, Owen AM. The vegetative state. BMJ
2010;341:c3765.
3. Vincent JL, Abraham E, Kochanek P, Moore FA, Fink MP.
Textbook of Critical Care E‑Book. Philadelphia Elsevier Health
Sciences; 2017.
4. Working Party of the Royal College of Physicians. The vegetative
state: Guidance on diagnosis and management. Clin Med (Lond)
2003;3:249‑54.
5. Goudarzi F, Abedi H, Zarea K, Ahmadi F, Hosseinigolafshani SZ.
The resilient care of patients with vegetative state at home:
A grounded theory. J Caring Sci 2018;7:163‑75.
6. Donis J, Kräftner B. The prevalence of patients in a vegetative
state and minimally conscious state in nursing homes in Austria.
Brain Inj 2011;25:1101‑7.
7. Goudarzi F, Abedi HA, Zarea K, Ahmadinejad F. Caring
experiences and challenges of families with patients in vegetative
state. J Clin Nurs Midwifery 2015;3:65‑79.
8. Leonardi M, Sattin D, Giovannetti AM, Pagani M, Strazzer S,
Villa F, et al. Functioning and disability of children and adolescents
in a vegetative state and a minimally conscious state: Identification
of ICF‑CY‑relevant categories. Int J Rehabil Res 2012;35:352‑9.
9. Gooshki HS, Kalkhoran SH, Ahmadi SM, Farahani AJ,Mahmoudi N. The experience and reactions reported by family
caregivers of vegetative patients: Qualitative content analysis. Int
J Ayurvedic Med 2019;10:162‑70.
10. Given B, Sherwood PR, Given CW. What knowledge and skills
do caregivers need? Am J Nurs 2008;108:28‑34.
11. Divdar Z, Foroughameri G, Farokhzadian J, Sheikhbardsiri H.
Psychosocial needs of the families with hospitalized organ
transplant patients in an educational hospital in Iran. Ther Apher
Dial 2020;24:178‑83.
12. Celik E, Aslan MS, Sengul Samanci N, Karadag M, Saglam T,
Cakan Celik Y, et al. The relationship between symptom severity
and caregiver burden in cancer patients under palliative care:
A cross‑sectional study. J Palliat Care 2022;37:48‑54.
13. Farokhzadian J, Forouzi MA, Sheikhbardsiri H. Mothers and
nurses’ perceptions of the family‑centered care barriers in
pediatric departments of an educational hospital in Iran. J Child
Adolesc Psychiatr Nurs 2021;34:219‑24.
14. Kuo DZ, Houtrow AJ, Arango P, Kuhlthau KA, Simmons JM,
Neff JM. Family‑centered care: Current applications and future
directions in pediatric health care. Matern Child Health J
2012;16:297‑305.
15. Koohi M, Bagheri Nesami M, Esmaeili R, Mousavinasab S,
Hosseini S. Effect of family participation in primary care provision
to reduce pain anxiety among burn ICU patients. J Mazandaran
Univ Med Sci 2017;26:88‑99.
16. Zahra S, Mitra P, Seyed Nooredin M. Effect of family participation
in ICU patients care on family’s anxiety level. Preventive Care
Nurs Midwifery J 2013;2:10.
17. Saeid Y, Salaree MM, Ebadi A, Moradian ST. Family Intensive
Care Unit Syndrome (FICUS): Letters to the editor. J Crit Care
Nurs 2019;12:1‑3.
18. Keykha A, Ramezani M, Heydari A. Attitude and barriers of
teamwork in intensive care unit from the perspective of nurses
in COVID‑19 pandemic. J Mil Med 2021;23:329‑37.
19. Hadian M, Jabbari A, Sheikhbardsiri H. Exploring challenges of
health system in Iranian traditional medicine: A qualitative study.
Ethiop J Health Sci 2020;30:1027‑36.
20. Sheikhbardsiri H, Doustmohammadi MM, Mousavi SH,
Khankeh H. Qualitative study of health system preparedness
for successful implementation of disaster exercises in the Iranian
context. Disaster Med Public Health Prep 2020;1‑10.
21. Lindgren BM, Lundman B, Graneheim UH. Abstraction and
interpretation during the qualitative content analysis process.
Int J Nurs Stud 2020;108:103632.
22. Lincoln Y. Naturalistic inquiry. The Blackwell Encyclopedia of
Sociology. Hoboken, New Jersey Blackwell; 2007.
23. Hetland B, McAndrew N, Perazzo J, Hickman R. A qualitative
study of factors that influence active family involvement with
patient care in the ICU: Survey of critical care nurses. Intensive
Crit Care Nurs 2018;44:67‑75.
24. Lamiani G, Guerriero V, Vegni E. Opening intensive care units
to family members: A contribution from the attachment theory.
Crit Care Nurse 2020;40:11‑2.
25. Nassar Junior AP, Besen BA, Robinson CC, Falavigna M,
Teixeira C, Rosa RG. Flexible versus restrictive visiting policies
in ICUs: A systematic review and meta‑analysis. Crit Care Med
2018;46:1175‑80.
26. Tyrie LS, Mosenthal AC. Care of the family in the surgical
intensive care unit. Anesthesiol Clin 2012;30:37‑46.
27. Sadeghi Z, Payami M, Moosavi Nasab SN. Effect of family
participation in ICU patients care on family’s anxiety level.
Preventive Care Nurs Midwifery J 2013;2:10‑7.
28. Au SS, Roze des Ordons A, Soo A, Guienguere S, Stelfox HT.
Family participation in intensive care unit rounds: Comparing
family and provider perspectives. J Crit Care 2017;38:132‑6.
29. Roze des Ordons AL, Au S, Blades K, Stelfox HT. Family
participation in ICU rounds – Working toward improvement.
J Eval Clin Pract 2020;26:1620‑8.
30. Au SS, Roze des Ordons AL, Parsons Leigh J, Soo A, Guienguere S,
Bagshaw SM, et al. A multicenter observational study of family
participation in ICU rounds. Crit Care Med 2018;46:1255‑62.
31. Mardom MA, Fatemi M, Moradi A, Alzamiani Noodeh F. The
necessity of educating caregivers of stroke patients – A review
study. Q J Nurs Manag 2021;10:0‑1.
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