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Davoudi, Malihe, Boostani, Reza, Manzari, Zahra Sadat. (1403). Lived Experience of Human T-cell Leukemia Virus type-1 -Associated Myelopathy/Tropical Spastic Paraparesis (HAM/TSP): A Phenomenology Study. سامانه مدیریت نشریات علمی, 49(5), 294-301. doi: 10.30476/ijms.2023.97867.2973
Malihe Davoudi; Reza Boostani; Zahra Sadat Manzari. "Lived Experience of Human T-cell Leukemia Virus type-1 -Associated Myelopathy/Tropical Spastic Paraparesis (HAM/TSP): A Phenomenology Study". سامانه مدیریت نشریات علمی, 49, 5, 1403, 294-301. doi: 10.30476/ijms.2023.97867.2973
Davoudi, Malihe, Boostani, Reza, Manzari, Zahra Sadat. (1403). 'Lived Experience of Human T-cell Leukemia Virus type-1 -Associated Myelopathy/Tropical Spastic Paraparesis (HAM/TSP): A Phenomenology Study', سامانه مدیریت نشریات علمی, 49(5), pp. 294-301. doi: 10.30476/ijms.2023.97867.2973
Davoudi, Malihe, Boostani, Reza, Manzari, Zahra Sadat. Lived Experience of Human T-cell Leukemia Virus type-1 -Associated Myelopathy/Tropical Spastic Paraparesis (HAM/TSP): A Phenomenology Study. سامانه مدیریت نشریات علمی, 1403; 49(5): 294-301. doi: 10.30476/ijms.2023.97867.2973

Lived Experience of Human T-cell Leukemia Virus type-1 -Associated Myelopathy/Tropical Spastic Paraparesis (HAM/TSP): A Phenomenology Study

Iranian Journal of Medical Sciences
مقاله 3، دوره 49، شماره 5، مرداد 2024، صفحه 294-301    اصل مقاله (268.04 K)
نوع مقاله: Original Article(s)
شناسه دیجیتال (DOI): 10.30476/ijms.2023.97867.2973
نویسندگان
Malihe Davoudi1؛ Reza Boostani2؛ Zahra Sadat Manzari* 3
1Student Research Committee, Department of Community Health Nursing, School of Nursing and Midwifery, Mashhad University of Medical Sciences, Mashhad, Iran
2Department of Neurology, School of Medicine, Ghaem Hospital, Mashhad University of Medical Sciences, Mashhad, Iran
3Department of Medical-Surgical Nursing, School of Nursing and Midwifery, Mashhad University of Medical Sciences, Mashhad, Iran
چکیده
Background: Human T-cell Leukemia Virus type-1 (HTLV-1) -associated myelopathy causes sufferers to experience changes in several aspects of their lives. Gaining a deeper understanding of these changes can help healthcare professionals improve care, enhance strategic decision-making, meet expectations, and manage patients effectively. However, there is no information about the experience and problems of patients with HTLV-1-associated myelopathy/tropical spastic paraparesis in Iran. Therefore, this study aimed to explain the lived experience of patients with HTLV-1-associated myelopathy/tropical spastic paraparesis.
Methods: This qualitative study used hermeneutic phenomenology in 2022 in Mashhad, Iran. Participants were selected using purposeful sampling. Data were collected through 21 semi-structured in-depth interviews with 20 eligible patients with HTLV-1-associated myelopathy/tropical spastic paraparesis. The data were analyzed in MAXQDA/2020 using the six stages proposed by Van Manen. 
Results: The main concept of “Reduced self-sufficiency and social dignity” emerged from the narratives of the patients, which included three main categories: “Disruption of desirable personal and social life”, “reduced perception of role competencies”, and “obligatory unpleasant lifestyle changes”.
Conclusion: HTLV-1-associated myelopathy/tropical spastic paraparesis slowly makes patients feel insufficient and causes a sense of degradation in dignity. The disease can fundamentally change personal and social life. Thus, due to its incurability and progressiveness, palliative care should be provided to them to live with dignity.
کلیدواژه‌ها
Respect؛ Human T-lymphotropic virus 1؛ Qualitative research؛ Hermeneutic phenomenology؛ Myelopathy
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مراجع
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