“I’m taking control”: how people living with HIV/AIDS manage stigma in health interactions

Abstract

Despite international efforts, stigma is still a significant issue for people living with HIV/AIDS (PLWHA). This paper explores the stigma encountered in health interactions, focusing on strategies PLWHA use to manage and reduce it. It is hoped that our findings will improve future interactions by contributing towards a more understanding practitioner-patient relationship. The data have been drawn from a small qualitative study conducted in Christchurch, New Zealand. Fourteen participants took part in semi-structured face-to-face interviews in 2013 and 11 of these participants were then interviewed again in 2014. Codes and themes were developed through inductive thematic analysis of the interview transcripts. Our findings identified that whilst the majority of participants had positive experiences, nearly all had faced stigma during their health interactions. Most of these encounters were due to healthcare workers holding exaggerated fears of transmission or not maintaining confidentiality and privacy. The main way that participants managed this stigma was through seeking control in their interactions. This overarching strategy could be further divided into three key themes: selective disclosure of their HIV status, self-advocacy and developing their HIV knowledge. We discuss these findings in the context of the current literature, comparing our results to strategies that have been previously identified in social settings.

“I don't want to look like an AIDS victim”: A New Zealand case study of facial lipoatrophy

“…A thematic analysis of all our participants revealed the diversity of experience in living with HIV. All participants experienced stigma, particularly around the challenges to disclosure of their HIV status to potential partners and employers, as well as their interactions with healthcare workers (Brinsdon, Abel, & Desrosiers, ). HIV was described as just another chronic disease (Thompson & Abel, ).…”

Perceived Stigma as a Contextual Barrier to Early Uptake of HIV Testing, Treatment Initiation, and Disclosure; the Case of Patients Admitted with AIDS-Related Illness in a Rural Hospital in South Africa

“…Therefore, when PLHIV select people to disclose to, they weigh the people's potential reactions to the disclosure and anticipate the effects of the disclosure on others [7]. As such, when disclosure to family and friends occurs, it is a deliberate, selective, and often planned behaviour, which balances risks and benefits [8][9][10]. The disclosure of one's HIV-positive status has important public health implications [2].…”

The relationship between negative responses to HIV status disclosure and psychosocial outcomes among people living with HIV

“…While some research suggests that even involuntary disclosure of a stigma may be more advantageous than the personal consequences of ongoing concealment (Chaudoir and Fisher, 2010; Kelly, 2002), evidence also indicates that disclosure of the stigma will have positive outcomes only when the response to this disclosure is supportive, caring and affirming (Chaudoir and Quinn, 2010; Rodriguez and Kelly, 2006; Wali and Regmi, 2017). There is also evidence to suggest that PLHIV tend to engage in selective concealment, which is deliberate and involves the weighting up risks and benefits when choosing to disclose (Brinsdon et al, 2017; Owuor et al, 2016).…”