HIV-related stigma, psychological distress, self-esteem, and social support were investigated in a sample comprising people who have concealed their HIV status to all but a selected few (limited disclosers), people who could conceal but chose to be open (full disclosers), and people who had visible symptoms that made concealing difficult (visibly stigmatized). The visibly stigmatized and full disclosers reported significantly more stigma experiences than limited disclosers, but only the visibly stigmatized reported more psychological distress, lower self-esteem, and less social support than limited disclosers. This suggests that having a visible stigma is more detrimental than having a concealable stigma. Differences in psychological distress and self-esteem between the visibly stigmatized and full disclosers were mediated by social support while differences between the visibly stigmatized and limited disclosers were mediated by both social support and stigma. These findings suggest that social support buffers psychological distress in people with HIV.
Ensuring that people living with HIV (PLWH) feel accepted in health care settings is imperative. This mixed methods study explored the perspectives of PLWH and health professionals on their interactions. A total of 262 predominantly gay men of Dutch origin participated in a survey study of possible negative interactions with health professionals, and semi-structured interviews were subsequently conducted with 22 PLWH and 14 health professionals. Again, most PLWH were gay men of Dutch origin. All health professionals were Dutch. PLWH reported negative experiences with health professionals including awkward interactions, irrelevant questions, rude treatment, blame, pity, excessive or differential precautions, care refusal, unnecessary referrals, delayed treatment, poor support, and confidentiality breaches. They also reported positive experiences including equal treatment, being valued as a partner in one's health, social support provision, and confidentiality assurances. Health professionals reported having little experience with PLWH and only basic knowledge of HIV. They contended that PLWH are treated equally and that HIV is no longer stigmatized, but also reported fear of occupational infection, resulting in differential precautions. Additionally, they conveyed labeling PLWH's files to warn others, and curiosity regarding how patients acquired HIV. The findings suggest that there is a gap in perception between PLWH and health professionals regarding the extent to which negative interactions occur, and that these interactions should be improved. Implications for stigma reduction and care optimization are discussed.
We explored workplace experiences of 10 health care providers with HIV in the Netherlands. We used semi-structured interviews to discuss motivations for disclosure and concealment, reactions to disclosures, the impact of reactions, and coping with negative reactions. Reasons for disclosure were wanting to share the secret, expecting positive responses, observing positive reactions to others, wanting to prevent negative reactions, and being advised to disclose. Reasons for concealment included fearing negative reactions, observing negative reactions, previous negative experiences, having been advised to conceal, and considering disclosure unnecessary. Positive reactions included seeing HIV as a nonissue; showing interest, support, and empathy; and maintaining confidentiality. Negative reactions included management wanting to inform employees, work restrictions, hiring difficulties, gossip, and hurtful comments, resulting in participants being upset, taken aback, angry, depressed, or feeling resignation. Participants coped by providing information, standing above the experience, attributing reactions to ignorance, seeking social support, or leaving their jobs.
Two conditions that are highly stigmatized and that can be found in combination with one another are the stigma of substance use and HIV-related stigma. In this qualitative study, we investigated 15 substance users’ experiences surrounding their HIV status from their diagnosis to their disclosure decisions and the reactions from others. We explored the layering of substance use stigma with HIV-related stigma, the consequences of stigmatizing experiences, and coping strategies employed to deal with stigmatization. Motivations to disclose included being in poor health, having visible symptoms, others seeing HIV medication intake, poor access to medication without disclosure, being asked directly about one’s HIV status, emotional catharsis, believing that the target will maintain confidentiality, wanting to notify a partner of past or future risk, and disclosing as a stigma reduction effort. Reasons for concealment were needing time to process the diagnosis first, fear of negative reactions, previous negative experiences with disclosure, having been advised to conceal, not wanting to burden others, and believing that one’s HIV status is irrelevant. Stigmatizing reactions from others included increased physical distance, excessive precautions, social avoidance, abandonment, rejection, exclusion, judgment, blame, name-calling, gossip, denial, and requests to conceal status. Layered stigma was prevalent and participants conveyed that substance use stigma is greater than HIV-related stigma. Emotional and social consequences were reported, along with a broad range of coping strategies. Implications for stigma reduction interventions are discussed.
We qualitatively investigated perspectives on HIV disclosure to health care providers (HCP) by people living with HIV (PLWH). Perspectives varied across PLWH and between PLWH and HCP. Some PLWH felt they should always disclose so that HCP could take necessary precautions or because disclosure optimized care. Others felt that disclosure was not an obligation but a courtesy. Still others felt that disclosure was unnecessary as all HCP should apply universal precautions or because HIV status was not relevant to care. Most HCP claimed they should be informed about patients' HIV status as this would reduce occupational risk of infection and improve care. HCP also felt that disclosure concerns by PLWH were unnecessary given the HCP' duty of professional confidentiality. Some acknowledged that disclosure was not always necessary but still indicated wanting to be informed. Perspectives on HIV disclosure in health care settings differed substantially between PLWH and HCP.
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