Iranian Journal of Medical Sciences

Document Type : Original Article(s)


1 Student Research Committee, Department of Community Health Nursing, School of Nursing and Midwifery, Mashhad University of Medical Sciences, Mashhad, Iran

2 Department of Neurology, School of Medicine, Ghaem Hospital, Mashhad University of Medical Sciences, Mashhad, Iran

3 Department of Medical-Surgical Nursing, School of Nursing and Midwifery, Mashhad University of Medical Sciences, Mashhad, Iran



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.


  1. Poiesz BJ, Ruscetti FW, Gazdar AF, Bunn PA, Minna JD, Gallo RC. Detection and isolation of type C retrovirus particles from fresh and cultured lymphocytes of a patient with cutaneous T-cell lymphoma. Proc Natl Acad Sci U S A. 1980;77:7415-9. doi: 10.1073/pnas.77.12.7415. PubMed PMID: 6261256; PubMed Central PMCID: PMCPMC350514.
  2. Eusebio-Ponce E, Anguita E, Paulino-Ramirez R, Candel FJ. HTLV-1 infection: An emerging risk. Pathogenesis, epidemiology, diagnosis and associated diseases. Rev Esp Quimioter. 2019;32:485-96. PubMed PMID: 31648512; PubMed Central PMCID: PMCPMC6913074.
  3. Einsiedel L, Woodman RJ, Flynn M, Wilson K, Cassar O, Gessain A. Human T-Lymphotropic Virus type 1 infection in an Indigenous Australian population: epidemiological insights from a hospital-based cohort study. BMC Public Health. 2016;16:787. doi: 10.1186/s12889-016-3366-5. PubMed PMID: 27526923; PubMed Central PMCID: PMCPMC4986258.
  4. Santana GO, Liborio AM, Galvao AV, Ponde MP, Sa KN. Signs, meanings and practices of people living with human t-cell lymphotropic virus type 1 or tropical spastic myelopathy. J Patient Rep Outcomes. 2020;4:31. doi: 10.1186/s41687-020-00198-6. PubMed PMID: 32367401; PubMed Central PMCID: PMCPMC7198688.
  5. Bangham CR, Araujo A, Yamano Y, Taylor GP. HTLV-1-associated myelopathy/tropical spastic paraparesis. Nat Rev Dis Primers. 2015;1:15012. doi: 10.1038/nrdp.2015.12. PubMed PMID: 27188208.
  6. Neubauer BE, Witkop CT, Varpio L. How phenomenology can help us learn from the experiences of others. Perspect Med Educ. 2019;8:90-7. doi: 10.1007/s40037-019-0509-2. PubMed PMID: 30953335; PubMed Central PMCID: PMCPMC6468135.
  7. Santos ACCd, Soares DdJ, Rivemales MdCC. (Un) Familiarity, illness and limitations imposed by HTLV: experiences of HIV positive women. Cadernos Saúde Coletiva. 2017;25:45-50. doi: 10.1590/1414-462X201700010186.
  8. Teixeira MA, Paiva MS, Couto PLS, Oliveira JF, Wolter RMCP. Sentimentos de mulheres soropositivas acerca da não amamentação. Revista Baiana de Enfermagem‏. 2017;31. doi: 10.18471/rbe.v31i3.21870.
  9. Teixeira MA. Soropositividade de mulheres para os vírus HIV e HTLV: significados do contágio do leite materno. Salvador: Federal University of Bahia; 2009.
  10. Zihlmann KF, Alvarenga ATd, Casseb JSdR. Reproductive decisions among people living with human T-cell lymphotropic virus type 1 (HTLV-1). Infectious Diseases and Therapy. 2013;1. doi: 10.4172/2332-0877.1000108.
  11. Zihlmann KF, de Alvarenga AT, Casseb J. Living invisible: HTLV-1-infected persons and the lack of care in public health. PLoS Negl Trop Dis. 2012;6:e1705. doi: 10.1371/journal.pntd.0001705. PubMed PMID: 22720112; PubMed Central PMCID: PMCPMC3373594.
  12. Zihlmann KF, Mazzaia MC, Alvarenga ATd. Meanings of breastfeeding interruption due to infection by human T cell lymphotrophic virus type 1 (HTLV-1). Acta Paulista de Enfermagem. 2017;30:80-6. doi: 10.1590/1982-0194201700012.
  13. Orge GO, Dellavechia TR, Carneiro-Neto JA, Araujo-de-Freitas L, Daltro CH, Santos CT, et al. Psychiatric Disorders in HTLV-1-Infected Individuals with Bladder Symptoms. PLoS One. 2015;10:e0128103. doi: 10.1371/journal.pone.0128103. PubMed PMID: 26018525; PubMed Central PMCID: PMCPMC4446325.
  14. Paranhos RFB, Paiva MS, Carvalho ESdS. Vivência sexual e afetiva de mulheres com incontinência urinária secundária ao HTLV. Acta Paulista de Enfermagem. 2016;29:47-52. doi: 10.1590/1982-0194201600007.
  15. Zihlmann, Karina Franco. From invisibility to visibility of the subject living with human T-cell lymphotropic virus type 1 (HTLV-1) infection/disease and the place of reproductive decisions in the fabric of knowledge and care [thesis]. São Paulo: Faculty of Public Health; 2009. doi:10.11606/T.6.2009.tde-02092009-142639.
  16. Orge G, Travassos M, Bonfim T. Living with HTLV-I. Gaz Méd Bahia. 2009;79:68-72.
  17. Rivemales MdCC. Vivência da sexualidade: representações sociais de pessoas soropositivas para o HTLV. 2013. Salvador: Universidade Federal da Bahia; 2013.
  18. Mohajeri S, Khaleghi M, Hassanshahian M, Ravan H, Mirzaei R, Behzadi A, et al. Evaluating the Prevalence of Human T-cell Lymphotropic Virus in Blood Donors and Thalassemia and Hemophilia Patients in Rafsanjan and Jiroft Cities of Kerman Province, Iran. Journal of Genetic Resources. 2023;9:69-74.
  19. O’Brien BC, Harris IB, Beckman TJ, Reed DA, Cook DA. Standards for reporting qualitative research: a synthesis of recommendations. Acad Med. 2014;89:1245-51. doi: 10.1097/ACM.0000000000000388. PubMed PMID: 24979285.
  20. Corbin J, Strauss A. Basics of qualitative research: Techniques and procedures for developing grounded theory. Oaks: Sage; 2015.
  21. Armat MR, Assarroudi A, Rad M. Inductive and deductive: Ambiguous labels in qualitative content analysis. The Qualitative Report. 2018;23:219-21.
  22. Van Manen M. Researching lived experience: Human science for an action sensitive pedagogy. New York: Routledge; 2016.
  23. Guba EG, Lincoln YS. Competing paradigms in qualitative research. Handbook of qualitative research. 1994;2:105.
  24. Gascón MRP, Santos RF, Capitão CG, Fantine-Nogueira MC, Oliveira ACP. A body that loses sense: a psychoanalytical reading of patients with tropical spastic paraparesis. Revista da SBPH. 2013;16:33-48.
  25. Teixeira MCL, Hennington EA. [People living with HTLV: meanings of the illness, experience of illness and its relationship with work]. Cien Saude Colet. 2021;26:6049-57. doi: 10.1590/1413-812320212612.15362021. PubMed PMID: 34909997.