"An unspoken world of unspoken things": a study identifying and exploring core beliefs underlying self-stigma among people living with HIV and AIDS in Ireland

Swiss Med Wkly. 2015 Mar 13:145:w14113. doi: 10.4414/smw.2015.14113. eCollection 2015.

Abstract

Principles: Human immunodeficiency virus (HIV) related self-stigma--negative self-judgements resulting in shame, worthlessness and self-blame - negatively influences access to care and treatment, and overall quality of life for people living with HIV (PLHIV). Despite evidence that high levels of self-stigma exist among PLHIV, and is experienced to a far greater extent than stigma received from the broader community, there is a paucity of research aimed at understanding causes and functions of self-stigma, and an absence of interventions to mitigate its harmful effects. Understanding the core beliefs underlying self-stigma is therefore essential.

Methods: This pilot study used a qualitative approach to analyse interviews and written statements to uncover core beliefs underlying self-stigma, the functions thereof, and strategies used to overcome it, among a heterogeneous group of PLHIV in Ireland.

Results: Core beliefs underlying HIV-related self-stigma were uncovered and grouped into four categories: disclosure; sexuality and sexual pleasure; self-perception; and body, illness and death. Reported functions of self-stigma included contributing to maintaining a "victim" status; providing protection against stigma received from others; and justifying non-disclosure of HIV status. To cope with self-stigma, participants highlighted: community involvement and professional development; personal development; and connection to others and sense of belonging. Findings were also used to create a conceptual framework.

Conclusions: This study helps fill identified gaps in knowledge about self-stigma as experienced by PLHIV. By understanding the core beliefs driving self-stigma, it will be possible to create targeted interventions to challenge and overcome such beliefs, supporting PLHIV to achieve improved wellbeing and lead productive lives free of self-limitation and self-judgement.

MeSH terms

  • Acquired Immunodeficiency Syndrome / psychology*
  • Adaptation, Psychological
  • Adult
  • Female
  • Guilt
  • Health Status
  • Humans
  • Interviews as Topic
  • Ireland
  • Male
  • Middle Aged
  • Qualitative Research
  • Quality of Life / psychology
  • Self-Assessment*
  • Sexuality / psychology*
  • Shame*
  • Truth Disclosure*