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

INTRODUCTION: 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. OBJECTIVES: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.