人类 T 细胞白血病病毒 1 型相关脊髓病/热带痉挛性瘫痪 (HAM/TSP) 的生活体验:现象学研究。

IF 1.6 Q2 MEDICINE, GENERAL & INTERNAL Iranian Journal of Medical Sciences Pub Date : 2024-05-01 DOI:10.30476/IJMS.2023.97867.2973
Malihe Davoudi, Reza Boostani, Zahra Sadat Manzari
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引用次数: 0

摘要

背景:人类 T 细胞白血病病毒 1 型(HTLV-1)相关骨髓病会导致患者生活的多个方面发生变化。深入了解这些变化可以帮助医护人员改善护理、加强战略决策、满足期望并有效管理患者。然而,目前还没有关于伊朗 HTLV-1 相关脊髓病/热带痉挛性截瘫患者的经历和问题的信息。因此,本研究旨在解释 HTLV-1 相关脊髓病/典型痉挛性截瘫患者的生活经历:这项定性研究采用诠释现象学方法,于 2022 年在伊朗马什哈德进行。研究人员通过有目的的抽样进行筛选。通过对 20 名符合条件的 HTLV-1 相关脊髓病/典型痉挛性截瘫患者进行 21 次半结构式深度访谈收集数据。采用 Van Manen 提出的六个阶段,在 MAXQDA/2020 中对数据进行了分析:结果:从患者的叙述中得出了 "自给自足和社会尊严降低 "这一主要概念,其中包括 "理想的个人和社会生活被破坏"、"对角色能力的认知降低 "和 "强制性地改变不愉快的生活方式 "三大类:结论:HTLV-1 相关性脊髓病/典型痉挛性截瘫会让患者慢慢感到力不从心,产生尊严受损的感觉。这种疾病会从根本上改变个人和社会生活。因此,鉴于其不可治愈性和进展性,应为他们提供姑息治疗,让他们有尊严地生活。
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Lived Experience of Human T-cell Leukemia Virus type-1 -Associated Myelopathy/Tropical Spastic Paraparesis (HAM/TSP): A Phenomenology Study.

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.

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来源期刊
Iranian Journal of Medical Sciences
Iranian Journal of Medical Sciences MEDICINE, GENERAL & INTERNAL-
CiteScore
3.20
自引率
0.00%
发文量
84
审稿时长
12 weeks
期刊介绍: The Iranian Journal of Medical Sciences (IJMS) is an international quarterly biomedical publication, which is sponsored by Shiraz University of Medical Sciences. The IJMS intends to provide a scientific medium of com­muni­cation for researchers throughout the globe. The journal welcomes original clinical articles as well as clinically oriented basic science re­search experiences on prevalent diseases in the region and analysis of various regional problems.
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