'We are the change' - An innovative community-based response to address self-stigma: A pilot study focusing on people living with HIV in Zimbabwe

• Published in: PloS one Vol. 14; no. 2; p. e0210152
• Main Authors: Ferris France, Nadine, Macdonald, Stephen H-F, Conroy, Ronan R, Chiroro, Patrick, Ni Cheallaigh, Deirdre, Nyamucheta, Masimba, Mapanda, Bekezela, Shumba, Godsway, Mudede, Dennis, Byrne, Elaine
• Format: Journal Article
• Language: English
• Published: United States Public Library of Science 13.02.2019; Public Library of Science (PLoS)
• Subjects: Acquired immune deficiency syndrome; Adaptation, Psychological; Adult; AIDS; Biology and Life Sciences; Cancer; Chronic diseases; Chronic illnesses; Community change; Comparative studies; Data processing; Demographic aspects; Disclosure of information; Emotional distress; Emotions; Epidemiology; Female; Health services; HIV; HIV carriers discrimination; HIV Infections - epidemiology; HIV Infections - psychology; HIV patients; HIV-1; Human immunodeficiency virus; Humans; Illnesses; Intervention; Male; Medical diagnosis; Medicine and Health Sciences; Mental depression; Patient compliance; Pilot Projects; Psychological aspects; Psychological distress; Public health; Qualitative analysis; Quality of Life; Rank tests; Research and Analysis Methods; Risk factors; Self Concept; Self disclosure; Shame; Social aspects; Social exclusion; Social Sciences; Social Stigma; Stigma; Stigma (Social psychology); Stress management; Support networks; Treatment compliance; Zimbabwe - epidemiology; Zimbabwe; Ireland; Zambia
• ISSN: 1932-6203; 1932-6203
• DOI: 10.1371/journal.pone.0210152

Self-stigma-negative self-judgements resulting in shame, worthlessness and self-blame-may play a crucial role in emotional reactions and cause emotional distress among many people living with HIV and other chronic illnesses. Furthermore, self-stigma negatively impacts on self-agency, quality of life, adherence to treatment, and access to services. High levels of self-stigma have been reported across many countries, however few programmes or interventions exist to specifically tackle this phenomenon. This paper reports the findings of a pilot study carried out in Zimbabwe using a programme incorporating "Inquiry-Based Stress Reduction (IBSR): The Work of Byron Katie"-a guided form of self-inquiry which helps users to overcome negative thoughts and beliefs. The primary objective of this uncontrolled pilot study was to examine the potential role of the IBSR intervention in helping people living with HIV to overcome self-stigma and associated states. 23 people living with HIV (17 Female, 6 male, average age 41 years) were recruited from a local HIV support network, via open call for volunteers. All participants received the intervention, consisting of a 12-week facilitated programme using techniques derived from IBSR: The Work of Byron Katie. Qualitative and quantitative data were collected and analysed pre- and post-programme. After taking part in the intervention, participants reported significant improvements in factors including self-stigma (1-month follow-up vs baseline Z = 2.1, p = 0.039; 3-month follow-up vs baseline Z = 3.0, p = 0.003, n = 23, Wilcoxon Matched Pairs Signed Rank Test) and depression (1mo vs baseline Z = 3.7, p = <0.001; 3mo vs baseline Z = 3.3, p = 0.001). Qualitatively, participants reported improvements including lessened fears around disclosure of their HIV status, reduced feelings of life limitations due to HIV, and greater positive mentality. Improvements persisted at three-month follow-up. With further development and larger comparative studies to confirm effects, the IBSR programme could become a novel tool to enable people living with HIV to support themselves in overcoming self-stigma.