The Barriers of Coping with HTLV-1-Associated Myelopathy/Tropical Spastic Paraparesis: A Content Analysis Study

Background: HTLV-1-associated myelopathy is associated with constant stress, so it is very important to cope with this disease. To improve the coping of patients with this disease, it is necessary to deeply identify its barriers. Aim: The present study was conducted with aim to explain the barriers to cope with HTLV-1-associated myelopathy/tropical spastic paraparesis. Method: This qualitative content analysis approach was performed on 17 patients with HTLV-1-associated myelopathy/tropical spastic paraparesis, who referred to Ghaem hospital clinic. Data were collected by conducting semi-structured in-depth interviews in a private room of the clinic. The Graneheim and Lundman s qualitative content analysis method was used for analyzing. Results: In this study, 5 subcategories and 2 main categories (internal barriers to coping with the disease, challenges with socioeconomic barriers) were developed. The main theme abstracted was also chains of stagnation and regression of passing the disease . Implications for Practice: Considering that health care professionals knowledge about HTLV-1-associated myelopathy/tropical spastic paraparesis and patients experiences is very little, the results of this study can be a basis to design a suitable and context-based care framework to improve the coping responses of patients.