Objective: This study sought to determine the prevalence of depression in HTLV-1 carriers and to explore the emotional experiences and issues they face.
Methods: A mixed method study was conducted among HTLV-1 carriers who received counseling in an outpatient clinic in Okinawa, Japan from June 2015 to June 2016. A descriptive qualitative study was conducted with HTLV-1 carriers. Depression accompanying HTLV-1 infection was evaluated using the Zung SelfRating Depression Scale (SDS). Semi-structured interviews were conducted, and the responses were analyzed qualitatively.
Results: A total of 22 HTLV-1 carriers participated in this study. Among the 20 participants who completed the SDS, 4 (20%) had depression. In the depression group, scores for agitation and loss of libido were higher compared to the other 18 items. Four main categories emerged from the interview transcripts: anxiety about onset of HTLV-1–associated disease, anxiety about disease transmission, self-healthcare management, and requests for counseling. All 22 interviewees reported feelings of anxiety about onset of HTLV-1–associated disease and having requested ongoing counseling. Anxiety about disease transmission included various sub-categories, and individuals with such anxiety needed counseling from nurses.
Conclusion: The study revealed that 20% of HTLV-1 carriers had depression. Respondents were anxious as to whether or not they will develop HTLV-1–associated disease, and were also concerned as to how they acquired the virus and if they are contagious. This highlights the need to establish a system for the provision of counseling services offered by healthcare professionals involved and experienced in the management of HTLV-1 infection and related disease.
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