Astonish yourself while worrying about another: Patients' reactions of HTLV-1-associated myelopathy/tropical spastic paraparesis diagnosis.

BACKGROUND

This study aimed to explore the patients' reactions when HAM/TSP was diagnosed. This qualitative content analysis study was conducted on HAM/TSP patients referred to an HTLV-1 clinic in Mashhad, Iran.

METHODS

We selected a purposive sample of 16 HAM/TSP patients meeting the inclusion criteria to participate in semi-structured interviews to explore their reactions and emotions when they first learned about their diagnosis. A qualitative content analysis was utilized with MAXQDA 2020 software.

RESULTS

Four categories and 14 subcategories were extracted, summarized in the main concept "Astonish yourself while worrying about another." The categories included threatened mental health, fear of falling into the path of ambiguity and darkness, fears and conflicts of deciding to expose the disease, and the double stress of threatening the health of others."

CONCLUSION

HAM/TSP is an incurable and progressive disease with several physical complications. Its first diagnosis can also cause severe psychological damage to patients and profoundly affect the patient's social and family relationships. Therefore, it seems that education and health policies should integrate multidisciplinary teams to minimize the effects of HAM/TSP on the patients' quality of life.