Disclosure behaviour and experienced reactions in patients with HIV versus chronic viral hepatitis or diabetes mellitus in Germany

Abstract

Disclosure is a prerequisite to receive disease-specific social support. However, in the case of a stigmatised disease, it can also lead to discrimination. We aimed to assess disclosure rates of HIV patients and the reactions they encountered in comparison to patients with chronic viral hepatitis or diabetes mellitus and patients' general perception of disease-specific discrimination. We constructed a self-report questionnaire, anonymously assessing the size of the social environment, the persons who had been informed, and the experienced reactions as perceived by the disclosing patients, to be rated on 1-4 point Likert scales. In addition, patients were asked whether they perceive general discrimination in Germany. One hundred and seventy-one patients were asked to participate. Five rejected, thus questionnaires from 83 patients with HIV, 42 patients with chronic viral hepatitis B (n = 9) or C (n = 33), and 41 patients with insulin-dependent diabetes mellitus (type I n = 14, type II n = 27) were analysed. Whereas the size of the social environment did not differ, HIV-infected patients were least likely to disclose their disease (60.7%, SD ± 31.9) to their social environment as compared to patients with chronic viral hepatitis (84.2 ± 23.3%, p<0.0001), or diabetes mellitus (94.4 ± 10.3%, p<0.0001), respectively. Within the HIV patient group, the mean disclosure rate was highest to partners (90.9%), followed by the public environment (65.2%), friends (59.4%) and family members (43.8%). HIV patients experienced supportive reactions after 79.3 ± 26.4% of disclosures, which was the case in 91.4 ± 19.6% and 75.7 ± 36.1% of patients with hepatitis or diabetes mellitus, respectively. 69.5% of HIV patients stated to perceive general discrimination in Germany. We conclude that HIV patients had experienced supportive reactions after the majority of disclosures, but the low rate points out that their information strategy had been very selective. Societal discrimination of HIV patients is still an issue and needs to be further addressed.

Disclosure and Experienced Social Support are not Related to Anxiety or Depression in a German HIV Patient Cohort

“…Patients' baseline data, rate of disclosure and support experiences in detail are published elsewhere [18]. In short, between February and October 2007, 85 HIV-infected patients have been asked, and 83 participated (response rate 98%) but three patients did not complete the HADS, thus data from 80 (65 male and 15 female) patients were available for analysis.…”

“…The current investigation uses data of a recently published study [18]. We investigated a consecutive sample of HIV-infected patients who came for routine visits to the Department of Clinical Immunology and Rheumatology at Hanover Medical School, and to the Ist Medical Department of the University Hospital, Mainz, both located in Germany.…”

“To die is better than to tell”: reasons for and against disclosure of chronic hepatitis B status in Ghana

“…In the case of chronic hepatitis B, disclosure can serve as a primary prevention intervention [6][7][8]. This is particularly crucial in high endemic countries such as Ghana, where transmission of hepatitis B predominantly occurs within families as a result of exposure from mother to child [9].…”

Factors Associated with Attrition: Analysis of an HIV Clinic in Japan

“…Therefore, it was assumed that foreign-born patients who did not use AiMIS (1) were able to speak Japanese without an interpreter, (2) had disclosed their HIV infection to family or friends who were able to act as interpreters, or (3) refused to use a medical interpreter because they were afraid that the interpreter could breach confidentiality. One study reported that the disclosure rate of HIV was explicitly lower than that of other chronic diseases, such as viral hepatitis or diabetes mellitus [9]. Therefore, the impact of medical interpreters for patients of other chronic diseases might be more significant than for HIV patients.…”